Kelly's Get Well Site

[ Journal 2002 ] [ Journal 2003 ] [ Journal 2004 ]

Sunday, May 10, 2015Posting to the journal has been on my mind a lot lately so I felt it would be nice to post on Mother's Day to give an update on my first born child. Kelly has been doing really well since the last post. I think she has been in the hospital only twice with the most recent being last week. She had the rhino virus which turned in to viral pneumonia. She is home now but she keeps on going. She has continued with going to Madonna University and was ready to move to the next level of the interpreting degree. To proceed into the next level, she had to go through interviews with the advisers of the program. They provided feedback expressing their concern that going to the next level might be very challenging physically based on her medical history. Kelly thought and talked to people about continuing with the interpreting degree and has decided to change her direction to go on for a deaf community degree. I never really knew how physically demanding interpreting could be until I went to a play with Kelly where they had speaking actors and interpreters standing next to them. They have to be on their feet for long periods of time and use every part of their body to interpret and express emotions. Kelly really paid a lot of attention to interprets in order to make the decision to change her degree path. She will also be taking classes towards a graphic design degree. She is very busy and right now getting ready to meet a classmate to see what she missed on Thursday. The instructor emailed her to say she covered a lot in class and didn't know if she would be able to catch up. Thank goodness, one classmate offered to meet with her today. At first she was not getting any responses, which made her sad but then Bill stepped up.

Thursday, May 29, 2014OMG...it has been so long since I have posted. The most significant thing that has happened lately is that my dear friend Charlotte Parenteau passed away suddenly last week. She was a follower of what was happening with Kelly through the years and e-mailed and posted Facebook messages all the time. I will totally miss having Charlotte electronically. We worked at Stroh's together and have seen each other a handful of times since Stroh sold the company in 1998-99. She was a sweet person, mother, grandmother. We went through many stories over the years because we used to walk with each other when we were at Stroh. She even gave us the pool that her kids had grown out of so Dave went and dismantled it and put it up in the background of our Ford Lake Ypsilanti house. I've been reading the posts on her FB when someone has tagged her and it makes me realize what a special person she was. I will truly miss her. RIP Charlotte.
Kelly took a class at Madonna to brush up on her sign language. She's auditing the class, which I'm glad they let her do this. She's been doing better this year at staying out of the hospital. I really feel that this is a result of dealing with doctors, PAs and nurses who deal with adult patients rather than pediatric patients. She doesn't feel good every day and doesn't eat very much at all because her stomach bothers her. She basically uses her feeding tube food for nutrition. Today, she went to her internal med doctor, Brent Williams, who we love. She has had multiple wounds on her right shin. This was the leg she fell on years ago when she crashed riding her bike. It caused a 6-inch slash down her shin. That tried to heal but her immune system is not the best so it has never really healed. Now it's huge and red and burning, etc. Dr. Williams gave her Bactrim with the Amoxicillin that she takes every day for ions. He is also giving her a referral to dermatology, which I hope happens soon. I'm a little worried about it. Thus the reason I'm on my journal. I was looking to see if she has ever had a reaction to Bactrim. It only came up with one note that I made in 2009. I love going back to see that was the time when she said I would never have to do laundry again. She must have been feeling really good that day because who likes doing laundry. Especially her who has to wake up every day hoping she feels good and if she doesn't trying to make herself feel better.
Right now she is in Flint going to a sign language play. She is so amazing and my hero. I love this girl more than I can express in words. Charlotte passed away so suddenly so I think it touched me in a special way...your loved ones will not be here forever so love them while they are here.

Wednesday, February 26, 2014Long time, no update. Sorry. In the past 14 months, Kelly has been admitted to the hospital 15 times. It's usually been for the same thing...vomiting, can't stop, admit to get under control. There have been other things at times also. The latest being that they didn't want her to eat or drink anything for the rest of her life. This is because the stricture in her esophagus is so tight that the doctors are afraid of aspiration. The GI doctor took a look with an endoscope one day but could not get the scope through because the opening was too small and Kelly was expressing pain even though they had given her some sedation. They got to the max on sedation and stopped. He was using a neo-natal scope. So they decided to try again the next day and put her totally out. Here is where it gets really wishy-washy. Kelly said after the procedure the GI doctor told her everything looked good and he would recommend having weekly dilations in order to get the stricture to open some. She got back up to the BMT floor and the doctors felt it was too risky for Kelly to do the dilations because of her blood clot issues. Currently, she is on the blood thinner Arixtra, which she gives to herself with a shot. The doctors said it was a long lasting med and so she would have to be off the Arixtra 72 hours before the procedure. If the GI doctor wanted to do this weekly, she would hardly ever be on the blood thinner. I'm sure you see where this is going. No blood thinner is a risk because she's had pleural effusions in her lungs. The GI doctor decides to do a swallow test, which is ridiculous because the BMT doctors have her NPO. So now they want her to drink the bierium crap and some other popping type liquid. She ended up throwing it up but not all of it because the technician was able to see that after the stricture at the top of the esophagus, the rest below was open. While this test was going on, the GI doctor comes in to talk to me. He says, "I'm not enthused about doing the dilations. I'll do them but I'm not enthused about it and wanted to wait; maybe even a year. I told him that I wish Kelly was here to hear this because she has told the BMT doctors she wants to do the dilations. So he leaves the room, the BMT PA comes in when Kelly has returns from the test to ask if the Gi doctor had come in. I told her yes but Kelly wasn't in the room and he told me he wasn't enthused about doing it and wanted to wait. She said that they were waiting to hear from him before sending Kelly home to know if they needed to change her blood thinner to Lovenox. We ended up going home with no med changes. Kelly has continued to eat and drink a little but then ended back in the hospital last Friday due to severe pain in her back. She has a compression fracture in L5, which is the lumbar area. They sent her home yesterday with a brace. She vomited in the afternoon but the PA didn't seem very concerned. We are so sick of these adult BMT doctors. I understand why though. We were used to the pediatric doctors who deal with children. They are so nice and caring. The adult doctors just tell her like it is and don't give in to Kelly's desires. That went bad on Dr. Couriel one day last year. She was at a clinic appointment with him and started throwing up in clinic. He said, "Kelly, I know you probably want to be admitted but we are going to try to handle this outpatient from now on." They took her to infusion and gave her fluids and nausea meds. She headed home but before too long she was running a fever. Turned out she had a fungus infection in her lungs.
All I can say is please give my poor daughter a break someone!!!! This is really getting to all of us. Honestly, I am becoming worn out. I can only imagine how Kelly feels. What would it be like having to force yourself out of bed every day when you are already nauseated and not feeling good. Then when you get up, you are limited on things to do. She talks constantly about not having any friends and that she is lonely. The friend part is partly her fault because for so long she has not answered and/or returned phone calls and texts. After a while people give up. It's work to have friends but she is also limited with what she can do. I just wish she could have a life like every other young adult living today. But that can't happen. She needs to find peace with her health and herself. I love her so much and it hurts so bad that she has gone through so much torture to live. Don't get me wrong...I am so thankful that we still have her and hope we have her for years to come. I just wish her quality of life would improve. Oh well...that's it for now.

Thursday, September 5, 2013 - Kelly was discharged from the hospital on August 19th. She was doing a lot better until the unthinkable happened. Our beloved miniature pincher, Nikka, was attacked by a dog. Her injuries were so severe that we thought it was best to have her put down. The owner of the lab that attacked her was walking on the sidewalk. Nikka was in our front yard. When the dog came in view after passing Dave's truck in the driveway, Nikka charged towards the sidewalk. She had her invisible fence collar on so she stopped where she normally does but the dog rushed forward towards her and bit into her left side, which was hanging down along with her lung. It was so, so sad. Kelly wanted to be there when the doctor put her down, which turned out to not be the best thing for Kelly because she keeps on remembering her laying there with her eyes open (which Kelly tried to close) and her tongue hanging out. Kelly has been very sad and says that's all she can think about and questioning if we did the right thing to put her down. She was going to the Humane Society several days last week to, as she would say, get her dog fix. Last Friday, Dave went with her. They stayed there for 4 hours and came home with a dog. We named her Bella. She's a medium size dog (29 pounds) and is part retriever and lab. She is 2 years old and has already had pups. I did not hear her bark until this past Monday when I was marinating steaks for dinner. She barked twice and was it loud; of course, we are used to Nikka's bark. Anyways, she does well going for walks. We think she must have been around a lot of dogs because whenever she sees a dog, she wants to play.

Friday, August 16, 2013 - Kelly remains in the hospital. After the bronchoscopy they asked her whenever she coughed up anything to put it into a container so they could test it. That resulted in them finding that she had a fungus in her lungs. Kelly asked Dr. Couriel how she got it. He said that it's in the air. We all breathe it but because of her poor immune system, she could not handle it. Since she has so many reactions to powerful antibiotics, they wanted to keep her inpatient to make sure she didn't have a reaction to some new drugs they were prescribing. They also put a pic line in for this and plan to take it out before she is discharged. Today, the psychiatric doctor told her he was stopping the Lexapro so we are to watch for suicidal tendencies and any sign of violence.Tonight, we played a new game Ticket to Ride. We are waiting for Ruth to show us more about the strategy.

Thursday, August 8, 2013 - Kelly is back in the hospital. She really hasn't been feeling good since the last admission; spending a lot of her time in bed. Amy, Carlton and Zachary were visiting the past 3 weeks. Amy said she has never seen Kelly when she doesn't get out of bed but a few hours a day. This past Thursday, Kelly saw Dr. Couriel in clinic and was vomiting. He said, "I know you want to be admitted but I'm not going to. You're been admitted 7 times this year already. We have ran every test possible on you and came up with nothing. Your blood counts are good today so we are going to get your nausea and pain under control in clinic and change your antidepressant drugs and also provide medicine to treat an ulcer." He told her he thinks she is suffering from post-traumatic stress. After that visit on Thursday, she did not get out of bed except to go to the bathroom until Sunday when I was able to coax her to take a shower. She sat in the shower for a good hour and cried the entire time. Based on what Dr. Couriel said to her, we felt it was probably time for us to provide some tough love so I told her that we may have to consider a nursing home or nurses coming in to take care of her. Nursing home was the wrong choice of words. I should have said a rehab facility. At one point in the shower she said, "I don't want to live." Very early Monday morning (4:30 a.m.), she woke me up saying, "I want to go to the ER." I asked her to wait until the clinic opens and we could go there to get it done. She just sat on the side of the bed and finally said, "Should I wake up Dad?" I said yes but really was afraid of how he would react to her asking based on the weekend we had. He stumbled out of bed saying he had to take a shower first. I then said that I would take her but that I needed to go to work and Dave needed to take Amy and them to the airport around noon so no one will be able to stay with you in ER. She was okay with this. This was the very first time in 11 years that she has ever been left alone in ER. I felt really bad but again it was part of the tough love we felt needed to be given to get her mood back on track. Well, now I am hating that we did this. She has pneumonia. They did a CT-scan of her abdomen and saw something so they scheduled an endoscopy yesterday. Her esophagus is so swollen they were only able to put a pediatric scope down her. We have not heard results from those tests. Today. they are doing a bronchoscopy, which I understand is removing fluid in her lungs. They are also going to do a biopsy to check for GVHD in the lung. She also spiked a 104 temperature during the night so they put her on an antibiotic and have called in the infectious disease doctors since she is allergic to so many of the powerful antibiotic drugs. I am kicking myself in the butt. My poor girl. sniff, sniff.

Sunday, June 2, 2013 - Kelly is currently in the hospital due to vomiting and nausea that started on Thursday 5/30 and ended with us being in ER Friday morning and an admission for control of the nausea and pain. She's having a lot of pain in her stomach. She was is a shared room but they moved her today because her neutrophil level is at 1.2. The day she went in it was 7.3. Why did it go down suddenly in two days. We think it may be the result of the GVHD drug that she is getting on a trial basis. This drug is normally prescribed for rheumatoid arthritis patents. We think she was hospitalized the last time she had this infusion and it makes her counts go down. Today, she got a neupagin shot, which she has not received for years. She's feeling okay. Took a shower today and is trying to walk the laps on 8B (yes, University Hospital instead of Mott because they are so packed over there; or so we are told by the BMT doctor but he does come over to visit her each day). Our hero during this visit was Jason who brought in an ultrasound to find a vein to get a good blood access line in the ER. I thanked him over and over again since her vein access is so limited. We think we want to call in ultrasound from now on to access a vein.

Friday, May 3, 2013 - The last hospitalization really opened Kelly's eyes. She could not remember anything when she was in ICU and that scares her. They ended up determining that she got the bacterial infection from the pic line in her arm so they took it out. In ICU they tried to get access through her jugular in case they needed to give her meds quickly. They tried on both sides but could not get one. The area on the left of her neck became infected. So...she came home from the hospital on 3 different antibiotics. She basically was bedridden because she felt so bad and was very depressed. We came home on a Thursday and her last dose of antibiotics was on Saturday. Once the antibiotics started getting out of her system, she started feeling better, thank goodness. We bought an Equinox because my Impala was constantly needing work. We also bought it so Kelly would be able to enter and exit the car easily. She finally started driving it two weeks ago. We are so happy that she once again bounced back and trying to carry on her life as best she can.

Sunday, March 24, 2013 - Since the last time I posted, Kelly has probably been in the hospital half of it. Yesterday, my precious Kelly was transferred to the ICU at University of Michigan for the first time. Ironically, the same time a year ago she was in M. D. Anderson’s ICU with the same problem she is having this time. She has a bacterial infection in the blood. She was admitted to Mott on Wednesday for the same thing she has been since 2013 began, which is when she ingests food she develops pain in her chest and ribs which almost always results in vomiting and diarrhea. They have also given her an aspiration diagnosis. This time Dave called an ambulance to transport her to ER and then admission.

I had decided to go up early this Saturday morning to do some work while spending time with Kelly at Mott. When I arrived, she wasn’t in the room so I went ahead and set up a station to work. Finally, she was wheeled to her room. She looked out of it in the wheelchair, which I thought was due to having an endoscopy, which we thought was going to be done after 3 gastro docs visited her room Friday evening. Turns out it was just a CT scan with no sedation. She just was not herself and she felt warm; like she had a temperature. After rubbing her head, I knew she had a fever. Luckily, Valerie (her tech) came in to take vitals. Her first blood pressure came up as 90/50. I immediately thought about our experience at MD Anderson because of the way Kelly’s eye contact was going, the fever, the blood pressures being low. This is when I started telling everyone walking into the room that she had septic shock a year ago. Valerie took another blood pressure reading and it was even lower. Of course, she then notified the nurse who then notified the BMT doctor who then notified the critical care doctor and we ended up in ICU at UM. When the critical care doc came to check her out, he could not believe how her vitals would fluctuate. She has a bacterial infection again just like MD Anderson a year ago. Of course, they are loading her up with antibiotics and fluids, taking cultures to confirm it’s bacterial infection. Today, they took out the pic line in her arm as it is foreign to the body and could be causing the infection. Like MD Anderson, they wanted to have a much better access to her veins and tried to put a line in her jugular last night but that didn’t work due to the hardness of her skin around her neck, shoulder and arms due to GVHD. As a backup they now have 3 peripheral lines available in case her vitals take a dive again. All of her counts are stable right now and we are hoping she goes to BMT tomorrow or Tuesday. The BMT doctors need to address the pain she experiences, similar to acid reflux, which is in the middle of her chest under the breast and radiates to the ribs. Please send your best wishes and prayers for Kelly to recover from this latest fight for her life. Sniff, sniff.

Sunday, January 20, 2013 - Yes, I'm actually providing an update. Kelly has been in the hospital for a week and I'll go back a little to update the reason why. She had a Neostar put in her chest a number of months ago so she could get photophoresis. That line would flush but it would not draw so about 10 days ago they took the Neostar out and put another line in. The line they put in had larger tubes. I guess it's normally put in people who need dialysis. The procedure did not go very well for Kelly. They didn't give her enough sedation so she was feeling everything. She said the nurse kept on looking around the shield they put so nothing would go on her face and she said she could not believe she was still awake with all the sedation they had given to her. When she came home, the site would not quit bleeding. She finally got it to stop but in the meantime fell asleep from all the sedatives they gave her. All weekend she was complaining that her neck hurt and she kept asking me to feel her chest where the port was put in asking if it felt hot. Yes, it felt hot. On Monday she called the clinic to tell them of the discomfort she was feeling in her chest and neck. They called her back in the late p.m. and told her to go to the ER. Of course, they admitted her. The second day I walked in after work and noticed her neck looked more swollen. Bobby, the PA on the floor, noticed it the next morning when he came in. They then were concerned that she may have a blood clot that was causing the swelling. They did an ultrasound, which was very painful. She came back to her room crying and called me because of everything they were saying the swelling could be caused from. I immediately left work. When I got there, they wheeled her over to Taubman to see a couple of ENT doctors. They put the tube up/down her nose to check her airway, which was not blocked. They felt it could have been a salivary gland that got riled up from the port being placed. They told her to suck on lemon drops to get the glands going again and that at least they didn't see anything that would require a surgery. They put her on 3 different antibiotics because of her sensitivity to the main ones they use. Vancomycin being one of them that they tried to give to her but she refused. At one point, Kelly said she felt worse than when she first came in. Kelly told them she wanted the port taken out because it caused her nothing but trouble. They took that out over the night on Friday. I guess she bled a lot again. Probably because of blood thinner. Anyways, they are going to put a pic line in her arm before sending her home because she will be coming home on antibiotics.

Tuesday, September 18, 2012 - Of course, once again I am saying why has it taken me so long to update this journal. I guess because so much has been happening since my last update. Amy, Carlton and Zachary visited for 3 weeks, which was so enjoyable. We had all the baby things that Chandra loaned to us that I am so thankful to have had on hand. I LOVED, LOVED, LOVED seeing and taking care of that baby. Not to mention all the others. I had to work most of the time they were here because I used up all my vacation and most of my sick days earlier this year. But that was okay. When I walked in the door, Amy would give me Zachary and I would take care of him until I went to bed or around that time. There were a couple times when Amy & Carlton went out. So I'm sure that was good for them. I could actually go on and on about what happens with the rest of my family, including me (I so think I could write a book with all of this and include all the stuff that I don't write here that is so personal). Anyways, then I think of Kelly and everything she has been through these past ten years. YES, it has been ten years (July 22, 2002). She is so amazing to have fought through everything she has been through.

Thursday, June 28, 2012 - Kelly had a neostar placed in her chest last Thursday. Right after she was supposed to go to infusion to get octagam. She took 50 mg of Benadryl and was about to take the Tylenol but the nurse rushed in to say that the pharmacy didn't have it so they had to reschedule for the next day. Well, you know what Kelly did the rest of the day, I'm sure - slept. She was out. On Friday, they decided to only give her 25 mg of Benadryl. While we were there on Thursday, Maria came in at Kelly's request to see Carrie, who was busy. She complained about her ankles being swollen all the time and a few other things that were bothering her. Kelly had an MRI of her legs on Sunday. The results are a swollen tendon and necrosis, which is cellular death of bone components due to interruption of the blood supply. Without blood, the bone tissue dies and the bone collapses. This is what she had in her hips thus the hip replacements. She also has this in her shoulder and now ankles. Ugh! Poor girl. It breaks my heart but she keeps on going. She is seeing Dr. Williams this morning. He's her internal medicine doctor. He will go over the results of the MRI that was done when she lost her hearing. The results noted shadowing in her brain, which the ENT said he could not decipher and that she needed to see Dr. Williams. The ENT doctor told her not to read too much into the results.

Tuesday, June 12, 2012 - Once again I am happy!!! We went to see the ENT doctor on Friday. First, Kelly had an audio test. Two different staff members came out to say, "Her hearing is much better." I cannot tell you how relieved I was sitting there. When we saw the doctor, he said that her hearing had really improved and was what they would categorize as normal but it's not as good as her right ear. He also said that there was no tumors. We were very happy and so was the doctor. He stood up and told Kelly to stand up and give him a hug. She did. I could tell that he was genuinely worried about Kelly. It really touched my heart. Kelly has touched so many people through this journey. We see so many people we know whenever we go to the hospital. She is such a survivor. She is one amazing young lady and we all love her so much.

Monday, June 4, 2012 - I am happy to report that Amy had her pic line removed about 3 weeks ago. She is doing fine and is gradually getting back into running. She's taking it easy though. The Abernathy family will be coming to Michigan on July 10th and will be staying through to August 4th so we are very much looking forward to their visit. I need to get a few baby items in my house now. Fun!

Tuesday, May 1, 2012 - Kelly remains in the hospital and probably will for another week. Her left lung has developed fluid around it and they don't know whether it is inside or outside by looking at the chest x-ray so they are going to do a CT-scan today to determine if it can be drained. She has colitis and continues to have stomach issues. No appetite, nausea, etc. Hasn't really eaten much at all so they put her on TPN, which is intravenous nutrition. They plan to do a colonoscopy today. They want to find the place where the e-coli is coming in and Dr. Yanik thinks it's her colon or her stomach. She stays very tired so sleeps a lot. This is due to all the pain and nausea meds.

Wednesday, April 25, 2012 - First of all...Happy Birthday to my wonderful sister Ruth and my awesome niece Mackenzie! Tomorrow is their birthday. I hope you have the most wonderful day ever.

Monday, March 26, 2012 - I am very happy to report that Kelly continues at her daily life. She met with classmates on Sunday and thought she was going to have to present sign language in person but apparently it was cancelled. Instead, the group (along with Sisters) went to Guernsey Dairy in Northville. They have food, ice cream (Kelly especially enjoyed). Tonight she is again at school. I cannot express how happy I am that she has not let what happened to her in Texas take her down. This girl is a SuperHero, SuperWoman, My Hero, My Daughter!!!

Wednesday, March 21, 2012 - I am happy to say we are home. We flew home this past Saturday. It is great to be back to some normalcy. Kelly was discharged from the hospital on Wednesday, 3/14. The doctor wanted us to stick around for a couple of days to make sure nothing happened once she was in the outside world and infusing the antibiotic herself. Of course, she needs help with infusing it into her pick line because it's on her right arm. They changed the medicine to once a day to make it easier for her. She was getting it 3 times a day in the hospital. I reserved a hotel room for the rest of the stay. We went over to Amy's house in the afternoons to see everyone and eat the dinner that Carlton's mom Nancy had cooked for everyone. She and Bruce got there on Tuesday night. It is their spring break. Amy and Carlton asked them to come to help out since Amy was still not feeling up to handling the baby by herself. After all that Kelly went through, she met with her classmates on Sunday to go to a play and also meet as a study group. When she was at class on Monday, she text me to say she was really tired. I can only imagine how tired she was because I was really tired at work that day. On Tuesday she saw Dr. Coriell. He wants her to get the pick line out immediately so they are removing it today.

Tuesday, March 13, 2012 - Kelly was moved from critical care to the main hospital on Friday. Over the past few days, she has had lots of pain in her back. She has no appetite at all so we brought her feeding tube apparatus yesterday since the doctor said it is okay for her to use. She had 3 cans last night. She has been on a couple of short walks but gets very tired. She said she feels like she is starting all over again. I told her it's just a small set back and she will be back on her feet in a couple weeks. The first few days are somewhat of a haze for her so she asked me what all happened. She said, "Whenever I go to the ER, I never think I could die." I told her I felt the same way but this time it was very scary. When her blood pressure was very low in ER she looked at me with her big eyes that were glazed over to see see that I was crying. She said, "Mom, I'm going to be okay." I so love this girl. She is amazing.

Thursday, March 8, 2012 - I woke up at 6:00 a.m. at M.D. Anderson. Had about 6 hours of sleep, which felt pretty good. Was on my way driving to Amy's house to take a much needed shower and received a call from Dave. Amy has a temperature of 102.8. OMG. Nooooooo. I immediately called her. She had taken ibuprofen so the temp was down to 99.?. She had called the on-call doctor and he told her to call Dr. Strong's office first thing in the morning to see if he could see her. I took my much needed shower and told Carlton that I would take her to the doctor at 9:30 so that he could go to work. His aunt had drove in from the other side of Houston to take care of Zachary. Dr. Strong did an examination and did not see any signs of infection but just to cover her in case of some underlying problem he prescribed Keflex, which is okay for nursing mothers. We mentioned Kelly being in the hospital to see what he thought about the possibility of Amy getting what Kelly has. He felt that Kelly would be getting sick from others being sick around her rather than her getting them sick, which makes sense to me. He is interested in knowing what Kelly has if the doctors are able to diagnose it.

Wednesday, March 7, 2012 - I was supposed to leave Houston today after spending 3 lovely weeks with Amy, Carlton and my first grandson Zachary. He was born on 2/19/12 at 11:23 p.m. and weighed 9 lbs, 13 ozs, and was 21-1/2 inches long. He is beautiful! I have posted pictures on my Facebook page.

Saturday, January 28, 2012 - Kelly saw the BMT team yesterday. They told her that it didn't seem like anything they are doing is helping her GVHD so they want her to increase the steroids to 100 mgs per week. They also cut her ECP back to every other week rather than every week. She called me at work yesterday around in the earlly afternoon to tell me this news. It makes me mad that they would tell her something like this when she has no one there to take this news. They know out family. When we are in the hospital we are sure to see someone who knows us and comes up to say hello. Why couldn't they email me since I've emailed them multiple times. Anyways,Kelly received that news and called me at work. After that moment I had a knot in my throat and heart. When I arrived home, she didn't want to talk about it and she continues to not want to talk about it. It makes me very sad because I feel we need to talk about it. I told her we should check out what can be done at M. D Anderson in Houston. She doesn't want to talk about it. My heart is crying right now; her's is also. I was asking her, "How do they know that ECP is not helping her?" I don't know the answer to that question. All I can say is please keep your hopes and prayers going. I feel like we need to dig deep down to get the strength and I know that we/she can do it. She is soooooooo strong! Stay STRONG KELLY!!! She had a stomach flu or something last weekend. She started vomiting and had diarrhea. I did NOT want to make an ER visit so I did everything I could to keep her relaxed to avoid it. She finally relaxed and fell asleep. I emailed Dr. Levine about her needing hydration. He told me to call to get into the clinic. They eventually got her in for hydration, which was scheduled at 1:00. We told the nurse that she wanted to go to class that night so she hurried it through. I drove her to and from class and everything went fine. I think the hydration really helped. On the way home she talked about how she was doing in the class. She's gotten almost a 100 on every quiz/test. This is great!!! I am so proud of her more than she will ever, ever know

We had a very nice holiday season with Amy and Carlton flying in and also Danette, Bob, Trevor & Kenzie driving in. We invited the Hatfield family to out house on Christmas Day so it was nice to see those who showed up. It was the first we had seen Amy pregnant. Ruth had a surprise baby shower at her house during the week she was here that was very, very nice. It was so nice seeing our family and close friends

I talked to Amy today. She is going to try to make it through the next week before she takes her pregnancy leave. They have decided to name him Zachary Carlton Abernathy. I cannot wait to see him!!! I have purchased a ticket to go down on 2/15. I hope he comes by then.

Tuesday, December 20, 2011 - WOW! I can't believe it has been TWO months since my last update. Yikes! Kelly continues to do ECP twice/week. They want to increase her steroids because of the skin GVHD. It's making her upper body harder and harder. She can barely raise her arms to shoulder level. They also want her back on the Gleevac and taking vitamin D and Caltrate. She had a pulmonary function test yesterday. The doctor said she believes all of Kelly's GVHD issues are skin related. I guess a lot of patients have lung GVHD but the doctor said Kelly's lungs look excellent so that was good news. She went to dermatology last week to get a mole removed on her stomach. It was a big one requiring 8 stitches. Yikes! She's a trooper!

Tuesday, October 25, 2011 - WOW! I can't believe it has been a month since my last update. Kelly has been dealing with having a cold and two antibiotics later I bought a Nedipot. Dr. Kitko suggested she try it today at ECP. So Kelly continues to do ECP twice/week. She is still going to the guitar and sign language classes. She was accepted to Madonna for sign language as a major and even had an appointment with a counselor. I am so, so proud of her. She keeps on keeping on. She is my HERO!

Friday, September 23 2011 - Kelly is back to doing ECP weekly and twice/week. We are wondering if the break from ECP made the difference. We shall see next week. They called Kelly to say they have her first on the list to get some new port that goes underneath the skin. My understanding is it's not visible on the surface. We are excited about that but have not heard anything since that phone call. She had several moles removed from dermatology recently. They all came back negative so that was a plus. I believe she got both of these phone calls on the same day so this really made her happy. She continues to do very well and we are so thankful for this. She spent some time a couple Fridays ago with her other grandma (Meemaw) by going to bingo with her and just hanging out at their house. Now she is headed over to see Grandma Hatfield this weekend. She'll be painting again I'm sure.

Tuesday, August 30, 2011 - Kelly having ECP twice per week didn't go very well because her veins are so bad. She went in last week on Tuesday. They tried for an IV six times and finally gave up. She went in the next day and they poked her 4 times and finally gave up. Dr. Levine is supposed to come up with an alternative. I know earlier she could not get a port because of her blood clot issues. So we will see what they come up with.

Wednesday, July 27, 2011 -Kelly had an appointment for ECP yesterday. When she went in, her blood pressure was really low so they called the doctor to see her. The doctor was upset that she was only getting ECP every other week. He wants her to start doing ECP twice/week every week. He also wants her to go from 4 mgs of steroids up to 8 mgs a day. He said she has a lot going on and they need to get a handle on it. Because of her low pressure, he switched her from ECP to get an infusion of fluids and pentamidine. I had to look this up b/c I don't know what it is used for. Pentamidine (formulated as a salt, pentamidine isethionate) is an antimicrobial medication given for prevention and treatment of Pneumocystis pneumonia (PCP). Pentamidine is also used as a prophylactic antibiotic for children undergoing treatment for leukemia. She was at the Cancer Center all day. Arrived home around 4:00 and laid on the couch until about 9:30. She got up early this morning because she was doing ECP at 8:00 a.m.

Sunday, July 24, 2011 - Kelly is attending the second day of a painting workshop with her grandma (Audrey) in Toledo. She even went to her house one day this past week and the two of them painted. It's really, really nice she is spending some time with her grandparents and learning things along the way. I talked to her last night because she stayed overnight on Friday and last night. She said she learned a lot at the workshop and that it was definitely worth the money.

Wednesday, July 13, 2011 - Yesterday, Kelly started going back to getting ECP. During ECP they gave her 60 mgs of steroids to put a shock factor on the GVHD. They plan to do the 60 mgs once/week when she goes to ECP so she's get the same dose in 2 weeks. She will still continue taking the 4 mgs of steroids every day. This morning she was complaining of being warm and she did feel warm to the touch so took her temperature. It was 97.4 so clearly she was having hot flashes probably from the steroids.

Thursday, June 30, 2011 - Well, Kelly ended up not going to Houston. She had ECP on Monday and Tuesday this week. She saw the BMT team after ECP on Tuesday and came away upset. She doesn't think she is getting any relief with the GVHD issues in her upper arms so they are increasing the Gleevac. If she begins to have side effects she will have to stop taking the higher dose. Kelly is down about getting no help with the GVHD after all she has been through with ECP, etc. I feel so bad for her. Once again I'm going to say the kid deserves a break someday, someway, somehow. Now, she has all this week with no medical appointments or volunteer commitments because she was supposed to be in Texas. She just was not feeling like she could make the trip and would hinder what the others would do. She said she felt weak and her knee is hurting so she didn't feel like she would be able to do a lot of walking. I think she's worried about blood clots also. They were supposed to drive to Amarillo TX for a 3-day weekend so that would have been a long time sitting in the car. So, I proceeded to cancel her flight and let Amy and Ruth know that Kelly wasn't going. Austin arrived safely in Houston last night around 7:50 p.m. EST. Amy called me from the airport while they were waiting. I hope they have a great week together.

Tuesday, June 28, 2011 - Kelly and my nephew Austin go to Houston tomorrow to visit Amy and Carlton. I went with Kelly last Thursday to the doctor who is measuring her eyes for lenses to help her dry eye. These lenses are huge; about the size of a quarter. Kelly had to stick around the office for 4 hours in case something happened and she wasn't allowed to drive so I took off work. We had a very nice day, getting breakfast, shoes and new cell phones. We both bought a Droid and we are LOVING our phones! Kelly said right when the doctor put the lenses in her eyes that they already felt better. The put them in and out of the eyes with a little suction cup.

Wednesday, June 8, 2011 - Learned last night that Amy and Carlton are pregnant! Yippee!!! She is only a few weeks pregnant but it was confirmed by the doctor doing a blood test. She is due in early February. Congratulations to them!

Wednesday, June 1, 2011 - Kelly has been very busy going to ECP twice a week and volunteering at the Humane Society. She stayed at Chandra's house over Memorial Day weekend. On Monday, Ruth had a birthday celebration for Kelly and Grant, which was very nice. Kelly was complaining about her right hip. On Tuesday, she woke up with her usual problem of redness in the right eye. She went to ECP and the nurse could tell she wasn't feeling good so they told her to take a break. Michelle (her nurse) also said she would call to see about getting an x-ray of her hip and an eye doctor appointment. The x-ray was fine as far as her hip but the doctor said it looked like she has another compression fracture in LP5 and that her hip pain could be from a pinched nerve since she has the fracture in her back. They plan to schedule an MRI of her back. She was very frustrated and down yesterday because she feels like she can't do anything without hurting herself. Today, she is at ECP and plans to go to the Humane Society in the afternoon. I am so glad she can pick herself back up after the day she had yesterday.

Wednesday, May 4, 2011 -Yesterday, Kelly had a BMT appointment. She has been doing really, really well lately. She’s been going to the Humane Society almost every day as a volunteer. I told her the other day that I’m so happy she is getting her animal “fix” almost every day now. So I was shocked yesterday when I arrived home from work to hear about the BMT clinic visit. Dr. Levine noticed that the skin on her upper arms is getting tighter. They have just hired a doctor who was previously at M. D. Anderson so he called him into the room. They believe the dreaded GVHD is lifting its head again and want her to go back to getting ECP, increase her steroids and go back to taking sirolimus twice/week instead of once/week. I am totally shocked! Kelly was totally depressed last night. Why can’t my baby get a break?

Thursday, April 21, 2011 - A lot has happened since the last post. The biggest event is that Kelly, Dave and I flew to Houston in mid-March to visit Amy and Carlton. It was beautiful weather the whole week we were there. It was in the 70s every day. Carlton’s father arrived the evening we got there. It took him 8 hours to get there from Aspermont. We all went to the rodeo the first day. It was a lot of fun. Those riders on the broncos and bulls being bucked are something else. It looks like they get their bodies to go limp. It’s amazes me that every bone in their body is not broken. A cute part of the rodeo was 6-year-olds with helmets get on the back of a sheep, put their arms around the sheep’s neck and then the sheep runs out into the arena. It doesn’t take long for the kid to fall off. Another thing done with multiple kids in the arena, they let go of calves and the kids run around grabbing the calves and try to bring them back to a squared off area in the arena. Very funny. I was amazed that the rodeo moved along one thing right after another and then they set up for the concert. We saw Miranda Lambert. It was a really fun time.

Thursday, March 3, 2011Happy 6th Birthday, Kelly!!! It has been 6 years today since Kelly had the bone marrow transplant. She has been a fighter and is a true survivor. She is my hero! Love you, Kelly!

Wednesday, January 22, 2011 Now I'm home. Dave is with her so I have not heard the results of the tests today. Based on everything the doctors have been seeing, I am confident that everything is fine and the air just has to work itself out. Kelly's ability to get rid of gas/air is compromised compared to what normal people go through with excess gas/air so it is painful for her. They finally have her so she is not having spasms on her right side and she was sleeping when I left.

Wednesday, January 19, 2011 –So a lot of time has passed since my last entry. We had a really nice Christmas, especially with Amy and Carlton being here. They came in a week early and were supposed to leave on Christmas Day. There layover flight in Atlanta was cancelled though due to snowy weather so they stayed with us one day more. They got on a direct flight the next day and sat in first class. That was worth it!

Monday, December 13, 2010 – On Saturday, Kelly was pretty much just hanging out and playing Donkey Kong on the Wii. She has been playing a lot of these games lately so I'm kind of glad she is in to it during this hospital stay. She and I are both in to playing games and I know that I can go home and play games all night if no one bothers me so at least she has something to do that she likes while in the hospital. I felt her eye looked better. She said it was still hurting and itching though. On Sunday, Dr. Yanik returned (he wasn't in on Saturday). She was still sleeping when they came in so they woke her up. Well, first thing in the morning, her eyes were very swollen. He told her he was switching over to IV antibiotics. Due to the snowstorm that we got yesterday, I did not visit her. She said, "Mom, you don't have to come up here. Everyone is talking about how bad the roads are so I would rather you stay home." So I stayed home and worked on my house for the upcoming visit from Amy and Carlton and also the Hatfield festivities that take place next Sunday at our house. Today, she said her eye feels better than it has in a week so it appears the med is working. She said so many things have been put in her eye today. An eye doctor actually came by to look at her eyes. Dr. Yanik says he wants to get a couple more doses in so I bet she won't get out until Wednesday or Thursday.

Friday, December 10, 2010 – Well, it's never a dull moment with Kelly. Yesterday, I was at work when she called to say that her eyes were bothering her and they were swollen. I asked her if she had just woken up and she said yes. I told her to put a cold washcloth on them and wait 30 minutes or so and call me back if they were still bothering her. I also suggested that she call the bone marrow team (BMT) to tell them about it and get the pain medication ordered that Dr. Berland said was okay for her to get from them. I didn't hear from her so everything was fine until this morning. Her left eyelid was swollen and red, as well as under her eye. I asked what the BMT team said but found they had not called her back. Shortly after that someone called. They recommended that she call Dr. Mian (her eye doctor) or her general medicine doctor to see if she could get in to see one of them after her procedure today. Dr. Williams office scheduled her to see someone at 3:30.

Tuesday, November 17, 2010 – I am happy to say that we are once again in a “no news is good news” mode. Kelly has been feeling fine and going to physical therapy almost every day. She is constantly playing games on her Ipod (me, too, on her old one). She had me feel the muscles in her biceps yesterday. WOW is all I can say. Building some muscle she is.

Thursday, October 29, 2010 – Kelly has been moving right along with her physical therapy until this week; going 5 days/week. Late last week, her ankle was bothering her so her physical therapist took a look at it and decided it was best for her to have it looked at by a doctor. They x-rayed it there but did not see any broken bones. It’s been hurting her so much this week that she is using her cane and sometimes crutches. I e-mailed her internal medicine doctor (Brent Williams) and asked him if he wanted to see her or give her a referral. He has not seen her in a while so asked her to come in tomorrow morning. He’s in charge of the resident program so a resident will see her first and then Dr. Williams. In the meantime, she went to the BMT clinic on Tuesday for a one-month-checkup. They proceeded to get her an appointment with an orthopedic doctor today and an MRI on Sat 11/6. She has an appointment tomorrow afternoon to get another dilation.

Wednesday, October 13, 2010 – Kelly has been doing good. She had another esophageal dilation on Friday October 1st. The anesthesiologist came in to discuss sedation (twilight sleep) vs. general (all the way out) anesthetic. Kelly explained that due to a really bad experience she had in the past, she wants to be put out (general). Shortly after that an assistant anesthesiologist came in to talk to us. She was really questioning why she wanted to be put out and was trying to find out what had been used during that bad experience. We explained it was a nurse rather than an anesthetist who administered the drugs and after the incident we were told to always request that an anesthetist be on the procedure. She said that’s good because they are able to use stronger drugs that nurses if something is not going quite right. To make it short, Kelly agreed to try the twilight (sedation) again since she’s supposed to be getting this done regularly in the future. The assistant anesthetist said that we should always tell them they should use Versed on her. She didn’t think the nurse gave Kelly Versed when she had the bad experience. I am happy to say that everything went very well. The upside to doing the sedation is that she also wakes up more quickly so we are able to go home.

Friday, October 1, 2010 – Kelly had a 2-week follow-up appointment at the BMT clinic on Tuesday, which I was glad because she developed a bad case of diarrhea and we don’t know why. Her stomach started bothering her over the weekend. I was wondering if it was the Gleevac. Dr. Levine took her off the Metoclopramide and told her to take Gleevac every other day until the problem clears up. Once it clears up she will go back on Gleevac every day. They are very hopeful that this med will help soften up her neck and esophagus. She doesn’t go back to see him until October 26th.

Wednesday, September 22, 2010 – Kelly had a 2-week discharge appointment at the BMT clinic last Tuesday, 9/14. On that day she was up to 136 pounds. The dietician’s goal for her is 138 pounds. She is now doing nightly feedings of four cans. During the day, whenever she takes in 300 calories, she can omit one can during the day. She has been taking in some calories during the day so she fluctuates with the nighttime feedings between 3 and 4 cans. I just hope when she goes in next Tuesday she hasn’t lost any weight. I am trusting her as far as the number of calories that she says she takes in.

Sunday, September 12, 2010 -Kelly's friend Jackie invited us to go the Tiger game last night in celebration of her fiance's birthday and then go to MGM casino. Kelly wanted to go. Well, yesterday it was rain, rain, rain. By the time we got to the game the rain had stopped, thank goodness. There were about 30 guys and girls there, Jackie's mom and me and Dave (us old folks). Around the 7th inning, Kelly felt like she needed to stretch her legs so we went to the concession area. We missed a lot when the Orioles started scoring and ended up winning the game 5-3. Kelly wanted us to just go on to MGM and get something to eat while waiting for the others. By the time we walked to the car, Kelly decided she was too tired to go to MGM so we came home. It was good to get out.

Sunday, September 5, 2010 - Happy Labor Day (tomorrow). Go Blue. U of M football looked good in their first game.

Sunday, August 29, 2010 - After making the journal entry on Wednesday, it got to be about 7:30 p.m. and they still had not paged me to see Kelly in recovery. I walked down to the waiting area to check the progress board to find that they had her listed as being discharged from the unit. I hunted down Stephanie, Kelly's nurse during the day, who was actually leaving and she had heard nothing. The clerk at the info desk started calling down there to find that she was fine; it was just taking her a while to wake up. It wasn't too long after that that she was brought up to her room. They put her on a PCA pump (dilaudid) down in recovery. She was still sleepy, resting comfortably and Ann was her nurse so I took off around 10:30.

Wednesday, August 25, 2010 - I don't even know what day it is. I have to check every time I make an update. Yesterday, Kelly had a number of visitors besides her parents. Danette, Trevor and Mackenzie came up in the afternoon and brought her a strawberry/banana smoothie. They said it was okay for her to try to take in soft foods and liquids. She took about 3 sips and that was it. Later she told me her throat was hurting pretty bad so it didn't go down well. My brother Larry came later in the evening. We had a nice visit. He showed us his pig latin ability also. While I was there the the fellow with the GI surgeon stopped by to consent Kelly to have a g-tube put in her stomach. He said they were going to try to "fit" her in sometime tomorrow, which is now today, and she would be NPO beginning at midnight so they stopped the feeding tube.

Monday, August 23, 2010My sister Ruth went to visit Kelly on Saturday and had a good visit. They called my mom wanting her to talk pig latin as they had been trying to do it. Kelly told me this morning that my mom and her sisters and brothers used to talk pig latin when they were picking cotton because then no one could understand them. I NEVER knew this. It’s amazing how fast my mom can speak this. I wondered how in the world did they come up with pig latin. It had to be Ruth (the one with the best memory of things past). On Sunday, Ruth called to say she has a neighbor who does reflexology and she was wondering if Kelly would like her to come up. Kelly didn’t answer their call, but when I called, she said she would like it. Kelly was asleep the whole time she was working on her feet. She woke up when they were leaving. She didn’t really remember anything she did but said it caused her to spit up a lot of mucus, which is something it is supposed to do.

Saturday, August 21, 2010On Thursday before I left, Kelly woke up. She took the covers off to go to the bathroom and there was blood all over her gown. Her IV had come out. She decided since she wasn't hooked up that she would take a shower. She still had the feeding tube in though. After the shower she said she felt a lot better. It was like she was a different person. On Friday they had the upper GI scheduled for 9:00. She asked if I would come in before she went down. We thought they were going to put her to sleep. I went up there and got to work around 9:15. Kelly was calling me around 10:00 saying they didin't put her to sleep at all. They pull the tube up into her stomach, injected the contrast and did the scans. She still sounded great. Around 1:00 she called me at work in tears. She told me the doctor came in and started talking about a surgery to take her esophagus out. She was extremely upset. I told her I would come over as soon as I could and about that time she said the nurse was coming in that she was going to ask for something to settle her down. I left work about 30 minutes after that. She was resting comfortably by the time I arrived. I went to find someone to tell me what went on and talked to Mary the PA on the floor. She said that Kelly did not remember anything that the GI surgeons talked to her about earlier in the week. Kelly has refused to have anything done as far as putting a feeding tube into her stomach. She has elected to do the dilation and they have that scheduled for Monday. Mary said that we all need to talk (me, Kelly, Dave) about the options she has available and decide what she wants to do. She said that Kelly most likely will be unable to take in solid foods anymore, and if she does, it won't be enough to get the right amount of nutrients in her. She said when she goes home it will be with the feeding tube in her nose. The doctor did mention removal of the esophagus as one of the things that can be done with people in her situation but that this is something they (BMT team) are NOT considering at all right now. I believe their preference is the g-tube in the stomach but this is something Kelly said she doesn't want at this point. Since Kelly was resting comfortably when I returned to the room, I went home to take care of Nikka. Right as I was walking out the door, Kelly called wondering where I went and she was nauseated again. When I arrived, I jumped in to bed with her and rubbed her head, neck, shoulders and back for about an hour. She finally settled down but also they had started her feeding tube up again. With the upper GI she had earlier, they left the tube in the stomach to see if she could tolerate the feedings going directly into her stomach. The nurse said the test came back normal so that they could put a g-tube in but they had to see if she could tolerate it. The nurse also said starting the feeding would help with her nausea and stomach cramps. I find my massaging and rubbing her gets her relaxed so that she can go to sleep. There are times when things are so bad that that doesn't help but right now it's working so I'll do it as long as she wants or until she finally falls asleep. She called this morning and sounds good. She's wanting to take another shower. Dave is up there right now and hopes to talk to the doctor again. He's very angry with the doctors for not doing something sooner about her lack of nutrition. He feels they saw she was losing weight and why didn't they do anything about it. Believe me, every time she went in and I was with her I told them she hardly eats anything and they could see by all the weight she has lost. It takes Kelly getting so bad that she lands in the hospital before they do anything. I guess that's what most doctors would do. Don't fix it until it's broke. They have to rely on the patient to do their part, and of course, Kelly is usually very positive during her clinic visits unless she's not feeling well. At least she is getting some nutrition and will hopefully be back on her feet and out of the hospital soon. Toni, the psychologist, has visited her twice and the physical therapist has come every day to get her up and walking so these are both good things. Now we just have to be more diligent in getting her to these appointments when she's at home. This is difficult also because she is a 30-year-old. She gets mad at us bugging her all the time to eat, get up, etc. It's a fine line and very hard. But we will do whatever we need to do as long as Kelly will tolerate us.

Thursday, August 19, 2010Kelly is resting comfortably right now (7:30 pm) but she began struggling again earlier today with nausea. So much so that she didn't even respond to my kissing her, rubbing her hair or saying hello. I guess that's a good thing for her to be sleeping soundly. I noticed they have the feeding level up to 60, which was a surprise because I was told earlier that 50 was the max. Susan, our nurse until 8 and lives in our neighborhood, said this way she can get more nutrients. Once again I had a crying spell because I am just so concerned. Tomorrow they have an upper gi procedure scheduled to see if they will be able to place a feeding tube into Kelly's stomach around her belly button. Susan said it will be a good thing. It will be a way for her to get nourishment and also take her meds without having to swallow them, which has been uncomfortable for many months. This is just scary to me but the nurses assure me that this is a good thing for her to get this in and get to feeling better. I feel it came on all of a sudden but not really because she's been losing weight over months. I just hope and pray she gets better soon.

Wednesday, August 18, 2010Yesterday, I walked over to Mott from work to take Kelly some clothes because she's still have diarrhea. When I walked in, Toni, the oncology psychologist, was in the room. Kelly can't cry anymore because her eyes are so dry but I could tell she was crying because her eyes were all red. I really didn't want to interrupt this meeting but I noticed that the feeding tube was not in her nose anymore. Kelly had started coughing so much that the tube started coming out of her nose. It came out so far that she just ended up taking it out of her nose. She said that they were going to put the tube in again at 2:00. She said her nausea was better so asked me and Toni if she started eating would she not have to put the tube in again. Since Toni was in there, I felt it was the perfect thing for me to do...go look for the doctors to ask them this question. It took me a while to find the nurse and then she found the physician's assistant and then Dr. Ferrara showed up. He said that Kelly is on the extreme edge of trouble and he would be reluctant to let her try to intake food herself but that he would talk to her. I told him also that the nurse that hooked her up to the feeding last night said the position of the feeding tube on her nose was not normal. They said they would try to get adult tubes in her because they are doing this in a children's hsopital. We have had our favorite nurse since we have been here during the nights. We love Ann! She takes such good care of Kelly and knows her so well. By the time I came back yesterday, she had the tube in but they didn't have her hooked up to the food. I told the nurse, "If she has the tube down her, they should be making use of it." She had not received any orders to start the feeding. I had to go home to let Nikka out and feed her then so by the time I came back, Kelly was hooked up to the feeding. She was resting comfortably last night and Ann was here so I felt good enough to go home. I did have a crying session with Ann though. She assured me that the feeding will help her feel better and not to worry. Today, Dave came up and found Kelly to still be comfortably resting. Dr. Ferraro said they are thinking about putting a tube directly into her stomach. It's called a "button." He thinks she's going home on a feeding tube but would like hr to eventually switch over to this button thing. I talked to Kelly as I was leaving work to see if she wanted me to bring her anything. She said, "No, I'm going to order some chicken soup." I went home to take care of Nikka. Upon walking in Kelly said she had started vomiting again. She has thrown up once since I've been here but not enough for only taking 2 spoonfuls of soup. The nurse turned her feeding completely off. Ann came in about an hour ago to say that she can give Kelly ativan around 8:30. Since she's given her the dose, Kelly has settled down now. What in the world is going on with her. It makes me sad.

Monday, August 16, 2010 Kelly is back in the hospital on 7 Mott. On Thursday, she called me as I was driving home from work to say her stomach was really bothering her and she had diarrhea and felt nauseous. As always, I told her to try to keep the vomiting under control. That night she did but on Saturday night it was a different story. Dave ended up taking her to ER on Saturday night around 10:30 p.m. They admitted her and I just heard from Dave that they are going to put a feeding tube in her. She lost more weight since the last admission 3 weeks ago. She is now under 120 pounds. I don’t think she’s had a chance to get enough of the new medication Gleevec for it to be the source of the problem but it could be. The doctors want to put the feeding tube in to get her stomach moving. Yikes! I don’t like this. Hopefully, it is just temporary.

Monday, August 2, 2010 It is definitely time to catch up. So much has happened since the last update. Apologies once again for not posting to the journal lately. I have been extremely busy and you will see why shortly. I feel the best way to handle everything is to list things by category:

Sunday, July 4, 2010 I am so upset to report that for the second time this week Kelly fell so was transported to U/M's ER twice this week. This time she fell forward so her nose, eyes and forehead are very bruised up and swollen. At first the doctor thought she fractured her nose but then came back to say the CT scan didn't show anything but it's hard to tell when everything is so swollen. She also skinned up both knees. They took xrays of her left elbow and knee because it was hurting her to move them, but luckily, there were no fractures there. How did this happen? A friend of hers, Kevin Clark, is in town visiting his parents at Portage Lake. He lives in Kansas now. They talked yesterday and he told her she should come out to the lake to see the fireworks. I was really surprised that she went because she spent all day outside in the backyard. Her friend Sara stopped by for a few hours just chatting away. She was under the patio umbrella the entire time and had sunscreen on but she must have got a reflection off the patio table so the left side of her face and her upper chest got a little sunburned. So she took a shower and had ice on the side of her face before she left for Kevin's. In the back of my mind I was really hoping she wouldn't go but she said later that she pushed herself because she wanted to see Kevin and Pete. About 10:30 p.m., Pete called my phone. Since I didn't know the number, I didn't answer it figuring it was a wrong number but then there was a voicemail message. It was Pete saying that Kelly fell and that she wasn't bleeding or anything but they called an ambulance. Right away, I called him back. He said she just looked a little scraped up but there was nothing seriously wrong and that she had asked them to call 911 because she was afraid to move her head again because of the blood thinners. She said it was dark and she was walking into the garage. There was a short step up similar to the problem that we had with our garage floor in that the driveway had sunk down so there was about a 1-1/2 to 2 inch step up. We had it fixed last year because we were so afraid that someone would trip.

Saturday, July 3, 2010 -We are still waiting to hear from NIH as to whether or not she will be in the study. We have received a full hard copy report from them as well as a CD. Kelly had planned to take it to the BMT docs at U/M but I think the disc is outs to keep. Since coming back Kelly has been FULL of energy. She's been finding it hard to sleep. Dave is also feeling she's different this week. Myself, I feel that she is happy and is becoming connected to her body and is excited about it. It is like she is going through a renewal. I do see a different person but it's not a bad thing at all. It's a good thing. I say all of this only to tell you that she fell on Wednesday in the kitchen. She dropped the top of her drink. The grabber in the kitchen is missing but she felt she could bend over and get it without the grabber. Well...her knees gave out so she went backward on her behind. Since her neck muscles are weak, about 6 inches from the floor her head just went back with no support. I wasn't home at the time so don't really know exactly what happened. I heard that Kelly was very upset about it and was yelling to her dad to call 911. The reason is because she is on blood thinners so Kelly was worried about hemmoraging. The ambulance was called, Dave called me and hung up so I called him back to hear what was going on. He called back tell me to meet him at ER. I arrived before the others. I am a 10-minute walk away. Dave arrived next and we waited long enough to wonder if they had taken her to St. Joseph Mercy Hospital. Dave said he told them to go to UM. Amy confirmed this saying the female on the ambulance team responded "okay." I remembered the last time we had to transport Kelly in a ambulance they took the long route and had on not sirens, which I feel is a good thing so this is the way I figured they were bringing her this time. She finally arrived and said she was feeling better. I think she was freaking out when it first happened because she was worried about the blood clots and having been on blood thinners. They took her back right away and one of the guys on the ambulance was informing everyone in ER that she has a complicated history and went on and on (we all know the story). They did a CT scan right away. When I heard that preliminary results showed everything looked okay, I went back to work because by this time Amy came up there. Around 4:00 they called to say they were on their way home. Kelly had a bump on the right back side of her head that was about the size of an egg. It was bruised also. She kept ice on it all night long. Thankfully, she felt better the next day and was up moving around again.

Monday, June 21, 2010 - On Friday, the day started out at 7:30 a.m. with Kelly going to apheresis. They normally put an IV in each arm, but on Tuesday when we visited them, they could only find a vein in Kelly’s right arm. This meant they would only be collecting half of the white blood cells that they normally collect. They were still okay with that. The tech who saw her on Tuesday said they would only try it once and if they could not access, they would let her go. The tech we were assigned to tried once, didn’t get it so went to find the tech who said they would only try once. All the time Kelly was saying, I don’t mind someone trying again. She said, “This happens all the time at U of M. They usually get the person that is best at doing IVs and she is able to place an IV with the first try.” I can’t remember the name of the girl we saw on Tuesday but she was the one who came to give it a try. She was able to get the IV in on the second try. She explained that she’s had health problems in the past and was stuck several times by someone so she is adamant about not sticking people more than is necessary when they are a hard poke. Most people probably would not put up with as much as Kelly does. They wanted to do a blood draw right after this procedure and asked us to stop by the 12th floor clinic for that but the techs in apheresis said there was no way they could do that because they put a metal piece in her arm. They finally reached someone on 12 and they sent the tubes down through their tubing system so they could take her blood while accessing for apheresis.

Thursday, June 17, 2010 - Kelly came home from the hospital on Friday. She ended up having pneumonia and a virus called parainfluenza type 3. Dr. Choi was hoping she could be discharged on Friday. This inpatient visit we found out she is allergic to vancomycin and sossin. We knew about vancomycin causing redman syndrome, but in the past, they just ran it slowly and she did fine with it. This time she developed the redman look plus was itchy all over. The same thing happened with sossin (not sure I’m spelling this right and I can’t get on the internet right now). I am typing this while sitting in the waiting room at NIH. The weekend was uneventful, thank goodness, because what happened the next two days was dependent on whether or not we would make our way to NIH. We took Nikka over to my parents house. This is the first time she has been left with someone else. Mom and Dad have become the sitters of their granddogs so we asked if they would keep her. With her being a bit hyper and yippie, we wanted to spend some time over there with her to make her feel comfortable. So far, she has done just fine. One thing that’s odd is she would not sleep with Mom on Sunday night. She usually always sleeps with one of us but she kept on jumping off of Mom’s bed. Mom ended up getting her comfy on the couch with the blanket that she loves from our house. I’ll get an update later today on how she is doing. The next order of business was exchanging vehicles with Ruth who being the generous person that she is let us borrow her Ford Flex. It is so comfortable. Thank You, RUTH!!! We love you!!! Watch your head in Kelly’s Alero. I talked to her last night and she said she has bumped her head twice already. Kelly warned her about it, too. It took us a while to get going. I told Kelly and Dave that we should shoot to leave at 8:00 a.m. We were in the car and on our way to Bethesda, MD, at 12:00 noon on Monday, June 14th. We arrived at our hotel (American Inn) at 9:30 p.m. On Tuesday, we got up at 5:30 a.m. because we were supposed to be at general admissions at 7:00 a.m. We decided to drive to the center even though the hotel is within walking distance of our hotel. Kelly left ankle was swelling up on Sunday and Monday so we didn’t want to push her having to walk on it. What an ordeal getting in here. The first stop is someone who writes down our license plate number on a sheet of paper. The second stop is a crew of people who tell us all to get out of the car so they can search it and we had to go inside a room to walk through a security station much like at the airport. This is where they printed IDs for all of us. The next stop was admissions. Kelly was not feeling the greatest. She felt like she needed to eat so at 7:55 a.m. we made our way to the cafeteria. The woman who helped us in admissions said, “That’s okay. They will wait for you if you want to get something to eat.” Kelly felt much better after she ate and took her meds. Then we made our way to the clinic on the 12th floor of the Mike O. Hatfield Clinic. Yes, “HATFIELD” clinic. Kelly said, “It’s a sign.” She is now in with the research coordinator in the GVHD clinic. At 10:00 she goes to do the quality of life forms/questionnaire, at 10:30 Dermatology & blood draw, 1:00 photography, 2:30 Nutrition, 3:00 meet with cGVHD (chronic graft vs. host disease) doctor and then at 4:00 Apheresis venous assessment (have no idea what this is). I will attempt to update the website on a daily basis.

Wednesday, June 9, 2010 - Kelly made it home from Vegas with no problems. Dave and I decided to go up north over the long Memorial Day weekend so her friend Jackie picked her up at the airport. Her flight didn’t arrive until very late (11:20 p.m.). Kelly sent me a message around 3:00 a.m. saying she was home. Many thanks to Jackie for picking her up. Additional thanks go out to Jackie for getting people together at Sticks this past Saturday to celebrate Kelly’s birthday. It was a nice time for her to catch up with some friends. This is the night though that it was raining like crazy and a tornado hit down in Dundee, which is about 25 miles south of us. On Sunday, Kelly woke up and started vomiting. She thought it was caused by the Zpak that the doctors gave her on Wednesday. She complained that her throat was hurting so they prescribed the meds. I’ve taken a zpak before and it definitely messes up your stomach. Anyway, she got her vomiting under control and laid in the recliner all day sleeping. She was weak and still didn’t feel good so she would ask me for help when she needed to go to the bathroom. Dave and I had finished watching The Blind Side (an excellent movie) and Kelly asked me to help her up. She was burning up. I took her temperature and it was 102.8. Needless to say, we started preparing for the ER. Dave took her and I stayed home to sleep. Kelly’s heart rate was 165 when she got to ER. Dave said that the ER team worked on her continuously when she came in. He told me to make sure to tell them what a good job they did in taking care of her since I’ve complained about their care in the past. I did that today. You gotta give them the good news, too. Kelly was totally out of it on Monday. I went in to relieve Dave at 7:30 a.m. Unfortunately, there was no room in Mott or on 8A so she is in 8C. We really don’t like being other places because the nurses and techs don’t know Kelly. Like her issue with swallowing. On Monday, the nurse really wanted her to take her meds since she had none the day before. I told her they would need to be changed over to IV or liquid because she can’t swallow large pills. When she does take pills, she has to take them down while eating peaches or pudding. She was NPO (no food) because they wanted her to get a spinal tap through x-ray and a CT scan. She complained of a headache so they wanted to make sure she didn’t have meningitis and a CT scan because of her history with pulmonary embolism. I am happy to report that both of these tests came back negative. They also did multiple swabs to send in to check for viruses. Last night her nurse said that it looks like all the virus swabs are coming back negative so she would probably be off of isolation precautions soon. She said it looks like she has pneumonia. They have been giving her breathing treatments since Monday. She has a lot of mucous that she is coughing up so at least it is moving.

Thursday, May 27, 2010 - Toronto was absolutely wonderful! My heartfelt thanks to Ruth & Zeljko for letting us stay at the apartment during our trip. Kelly felt good every day except Sunday. She woke up with a headache but took some medicine so was able to get rid of it by the time we were on our way home. On Friday, we went to Niagara Falls. It was a cloudy day and on the chilly side. Around the main/big falls, there was a lot of mist so they were hard to see. The wind was blowing a lot so tourists were getting wet just walking into the gift area and where you buy tickets for various thinks. We walked behind the falls, which was cool. It was interesting how much the falls have eroded over the many years and what they did to stop it from progressing too fast.

Tuesday, May 18, 2010 - Kelly has been feeling GREAT!!! She came back from Columbus, OH a different person. Something good happened in Columbus. One thing is Heather convinced her to get back on Facebook. She’s been on it every day since and has been connecting with so many people. I am so happy that she is feeling good. She came back saying she is tired of not feeling good and feeling sorry for herself. She took it to heart because she’s been getting together with her friends on a regular basis.

Monday, April 26, 2010 - HAPPY BIRTHDAY TO RUTH & MACKENZIE!!! My sister & niece born on the same day. It was great having some family time this past weekend and Kelly even felt okay to go. First, Austin was in the Battle of the Bands at Westin Hotel at the airport. He has been a part of the Detroit School of Rock for a couple of years now. I think his desire was to play drums but he had to settle for lead singer, which is not a bad deal at all. This was the first time that Kelly has seen Austin sing. I saw him at a street festival in Royal Oak and he was awesome even though it was outside. He also played drums on one song that day. I could tell he could hold a tune on that day. It is rock but I am a rock fan at heart. That's what I grew up with. Anyways, the microphone was not working on the first song that Austin sang but he kept his focus and sang louder and made it through the song. During the second song he was given a substitute mic that WORKED! They played 4 songs. His band won FIRST PLACE!!! Yeah! Go Austin! He's on to the marching band now at Plymouth High School playing drums. That should be a lot of fun.

Friday, April 16, 2010 - Kelly has been having a pretty good week up until yesterday. She was so proud that we had actually gotten outside to walk 3 times this week. We did the congratulatory hand slap on Wednesday as we were walking. Nikka was also involved. We have been taking her to the high school. She loves to be off the leash and running in a field. We’ve decided it’s the only way to get her some exercise. When we walk her on a leash, she’s always gnawing at it because she wants to go faster. She’s funny.

Sunday, April 11, 2010 - Kelly is still coughing away. Deb called from BMT on Friday to see how she was doing and prescribed her an anti-viral med, which I stopped by after work to get but they needed a prior authorization so now I can't get it until next week. On Saturday, I had made appointments to go to Queen of Hearts to taste their wedding cakes and Saline Flowerland to talk about flowers for the wedding. On Friday night Kelly said she would go so I was really hoping she would feel good enough to do it with me since I am not very good at making decisions to purchase things on my own. She got up, took a shower, took Benadryl and off we went. We takes a vanilla with fruit filling, a chocolate with mousse filling and carrot cake. They were all delicious so I provided the deposit to book them for the cake. We then made our way to look at the flowers, which was much, much harder. I provided the deposit once again to secure them for the date but we have to start looking and saving pictures of what Amy wants. I can't believe all the choices. After that we came home and Kelly went to the recliner in the family room and stayed there until about 8:00 last night. She slept most of the time. I told her during the day she should be taking Sudafed, not Benadryl, which she realized too late. I am hoping to get her up today to do a little shopping at Sam's. She is very, very weak. She said she weighs 130 lbs, which she hasn't weighed since she was in high school. She realizes she needs to start eating things with more substance. Lately, all it's been is canned peaches to help get her pills down, Carnation Instant Breakfast with the high protein and I've been putting ice cream in it also. She's been liking that a lot. Yesterday, she did eat some tuna. But she eats like a bird. Gotta work on this.

Thursday, April 8, 2010 - Last week, Dave was very, very sick all week long. He was trying to stay contained in the bedroom as much as possible but that didn't work as Kelly and I both came down with some version of what he had. Dave is still not feeling well and just went back to work this past Tuesday. He also went to the doctor on Friday, April 2nd. I was surprised he finally decided to go to the doctor. It takes a lot to get him there so he must have been feeling pretty bad. The doctor did a chest x-ray and that was fine so then said he has a virus and to buy some Sudafed or Sineoff that is behind the pharmacy counter. It is obviously stronger but I didn't know that kids are using this stuff to get high. I even had to show my drivers license to get it. Scary! By Monday, Kelly was really feeling bad so she called the bone marrow team. Of course, they told her to come in. They at first said they were going to admit her. Upon discharge last time, they had changed her blood thinner, stopped her blood pressure pill and started another pill that the gastro doctor thought might help her swallowing issues. I need to get the name of that drug to record it here. I just asked Kelly but she doesn't know the name of it (as she's coughing like crazy in the room next to me). I suggested that she get up just to get her body in a different position to get things moving around. Doesn't feel like it yet but hopefully will before the night is over. OK, back to what happened this week. Both Dave and Kelly were wearing masks in the waiting room. Once they got into the room to see them they asked Dave why he was even there and told him to go home. They decided to give Kelly some IV hydration and not admit her, thank goodness, so I picked her up after work. That night she said she felt better but as the week has gone on she is just trying to make it through. Deb called later in the day to say her blood work showed she did have a virus. They gave her a Z-pak just to cover her that she has been taking. This is soooooo disappointing because her friend Jackie asked her 2-3 weeks ago to go with her downtown Detroit for the Tiger opener tomorrow. Jackie reserved a room at Greektown casino so that if Kelly needed to, she could go rest in the room at any time and Jackie was willing to go with her. I know Kelly is so disappointed that she is not feeling better and most likely will not be going tomorrow unless she has a miraculous recovery. Speaking of miraculous recovery...when Kelly called me on Monday to say they were going to admit her, I told her to tell them they had 4 days to get her back on track because she had big plans on Friday. I e-mailed Jackie, Amy and my sisters to let them know. Amy responded, "I will pray for her." Shortly after getting that message I heard that they were NOT admitting her to the hospital so I felt that was an answer to Amy's prayer. I don't think a prayer will work for tomorrow, but who knows?

Friday, March 26, 2010 - I forgot to mention one thing that Dr. Choi said at the visit on Monday as far as Kelly’s swallowing problem. Kelly thought that the balloon procedure was the last resort before having surgery, which she thought was to remove part of the muscle in her neck. Dr. Choi said it was a radical surgery in that they would remove the entire esophagus. Kelly said was surprised and immediately said she didn’t want that.

Thursday, March 25, 2010 - On Monday after being discharged on Saturday, Kelly had a full day of appointments. We started with Dr. Mian. Every time Kelly has had an appointment with Dr. Mian lately, she’s been in the hospital. We got there pretty early to find out that they had moved into the new building for the Kellogg Eye Center. They still need to work on their parking but the new building is awesome. They had only been in their for 2 weeks so everyone was unsure of rooms we were in, etc. After a thorough exam, Dr. Mian put plugs into the tear ducts of Kelly’s bottom eye lids to help with her dry eyes. He said he can also plug the top eyelid tear ducts but Kelly decided to go with the bottom eyelids first. He also prescribed a steroid that might help her plus told her to buy over-the-counter gels to put in her eyes. He gave her a list of options for the gel or lubricants.

Sunday, March 21, 2010 - Kelly was discharged yesterday. Dr. Yanik called me around noonto give me an update on what is going on. When I realized who he was, I must say I was a little scared, but Dr. Yanik being the kind, gentle person he is made it a very easy conversation even through my tears. At first he was telling me that they have changed the anticoagulant medicine from Lovonox to Aristra (I don't think I have the spelling right; I need to research it more). I asked Dr. Yanik how do I back off as a parent because Kelly was mad at me for coming over on Thursday around 2:00 because she was not answering any of my and Dave's phone calls. For me I felt I deserved the respect as a mother to at least pick up the phone or text or something to let me know everything was okay. From Kelly's perspective, she felt if anything was wrong she would be calling. Dr. Yanik went into a story about his 20-yr-old son with his nut allergies. I don't feel it's fair to detail everything that he told me so I will just say that there comes a time when you have to back off and trust you daughter to take care of herself without hounding from her parents. Dr. Yanik said it's very hard but you just have to have trust. Through my tears I thanked him for sharing his personal feelings about this.

Thursday, March 18, 2010 - I was a total mess yesterday when I went to the hospital; crying that is. I finally just had to let it out. Dave had been letting it out for the past two days and mine just caught up with me when I went to the hospital. She was not in her room. They had taken her down at 6 for an MRI. Ultrasounds of her arms and shoulders found more blood clots. Dr. Yanik wanted the MRI to see things in her stomach. He said the clot in her lung is at the very top. Again, an organ described as being shaped like a tree with branches extending upward. The clot is at the very top of one of the branches and not very big so that is good news. On Tuesday night Dr. Yanik said Kelly is only on a quarter of a dose of Lovonox and that a “normal” person would be on 80 mgs twice/day and she was only on 40 mgs once/day. She is now bumped up to 40 mgs twice/day. But I reminded him of the reason they took her down to 40 mgs once/day is her body was not processing it normally and she developed the hematoma in her muscle back in November (I think that’s when it was). Anyways, they have to figure it out before she can leave. She is hoping to go home before the weekend. Dr. Yanik said he will try to get her out before the weekend but I recall 5 years ago when Dr. Erba said she could do a one-day pass in order to go to Jenny’s wedding for the photos (Kelly was a maid of honor). That did not happen because her platelets were so low. But the wedding party visited Kelly the next day at the hospital for pictures. It was nice and thoughtful. Stay posted.

Wednesday, March 17, 2010 - Kelly is back in the hospital. She’s been complaining about her chest since the procedures two weeks ago. Last week, I kept telling her to call the doctors so they could check it out. She called on Monday and got an appointment to see her internal medicine doctor on Thursday. However, yesterday, when driving back from PT she called me to say it was hurting a lot and she was going to try to see the BMT or gastro doctor b/c she had to pick up prescriptions. Next thing I know, she called to say they want her to go to ER because they need to get a CT scan and that is the only way they can get one immediately. She drove herself there and was fine with that because Cathy Lord was in the office and leaving on another trip so I had to finalize things for her but I did tell her I would leave work if she needed me to. She got there around 2:00. I finally made it to the hospital around 6:00. As I was walking back to her room at ER, my phone was ringing and it was someone from the hospital. I didn’t answer it because of reception. We walked into the room. It was Kelly calling me from the phone in the room. They were admitting her because she has a pulmonary embolism. We can’t believe it! Further scans of her legs found clots in her left leg around her knee and ankle. What is going on? We asked Dr. Yanik when we finally got to the room around 9:00. He came in around 10:00. I can’t believe he was still there. I said, “Did you hang around just so you could come to see us?” He said, “Yes, and other reasons.” They don’t really know what is going on either. He said he met with a group of BMT doctors talking about her. Since she has the filter, the clot could not have gotten into her lung from her legs. Their thinking is it happened after the procedure and came from her stomach. They increased her Lovonox and will be doing more scans today of her arms and shoulders. She is down for an MRI right now. She was really positive about it all. She said, “It was a really nice day, I was feeling good and ready to go home and do some more painting and then this happened.” I don't know how she can stay so positive. She’s amazing!!!

Saturday, March 6, 2010 - Kelly ended up staying in the medical observation unit overnight on Wednesday. She slept the entire time until her nurse Dori came in to say she had to open her eyes, sit up and eat so the doctors know you are able to go home. Kelly did and ate some yogurt. Dori brought in her discharge paperwork and then said we had to wait for the doctor's discharge papers and that could take some time because they are discharging a number of people. Kelly said after she left, "Well, I am going back to sleep then because it can take a while." I just told her when someone walks in your have to wake up. That's exactly what she did. We arrived home around 4:00 p.m. on Thursday. The only complaint she's had is that her chest hurts and it was worse yesterday. I guess anyone's chest would hurt if they had 3 balloons inflated inside it.

Saturday, July 18, 2009 - I have exciting new! Amy and Carlton are engaged! They both flew in on Thursday July 2 just after midnight. The 3 of us headed up north and arrived at 4:00 a.m. Dave and Kelly had driven up during the day. Carlton had called Kelly prior to coming up here saying he wanted to propose to her while he was up here and wondered if we had any ideas on where he should do it. We suggested us all going to Mackinac Island. So on Friday, July 3rd, that's what we did. Drove up to Mackinac and took the ferry over to the island. Dave, Kelly and I took our own bikes and Amy & Carlton rented some. We saw 3 weddings taking place on the island that day. Dave and Kelly took off on their bikes and just kept on going. Once Kelly gets started on the recumbent bike she doesn't want to stop because she needs help to get going. I was kind of hanging back with Amy & Carlton. They were stopping to take pictures so I took of few of them and decided to travel on ahead of them rather then sticking around.

Wednesday, June 17, 2009 - Well, the Wings didn't win. They were just not bringing it last Friday night. Makes you wonder if it isn't fixed like everything else in the world.

Saturday, May 30, 2009 - And the saga continues...yesterday around noon, Kelly got out of bed, went to the bathroom, had diarhhea and started vomiting. This past month she has been feeling nauseated almost every day and hasn't had much of an appetite. She saw Dr. Williams about 3 weeks ago. He didn't like the way her injury looked from the bike fall so he put her on augmentin. About this same time, Kelly cut back on the Oxycodone 40 mgs/day. I felt that the antibiotic and reduction in pain meds was causing her to be nauseous. She also did not get out of bed for a week because of feeling so bad. I've heard when reducing pain meds, some people feel really bad so on top of the antibiotics, it was not a good idea. Anyways, she could not control the vomiting so she ended up in ER. They did blood work, which was good - her blood counts were good her organ counts were good. They did a chest x-ray, which looked good but saw some inflammation in the intestine lining so ordered a CT scan with contrast of her abdomen. This meant she had to drink 2 glasses of the contrast junk while being nauseated. I cannot believe this kid. Right when they walked in the door to take her for the CT scan, she grabbed a basin. I thought she was going to throw everything up but it was only a bit of bile. So they took her down for the CT scan. As soon as she came back, she threw it up. She's amazing to have the strength and will to keep that junk down for the test. It was worth it...they didn't see anything in the abdomen but they saw another huge clot (more to come about the clot). So right away the ER doctor gave her a bolice of heparin and a drip. Prior to this they had decided to admit her anyway because her nausea had not subsided. We finally got into the room at 2:00 a.m. Most of today Kelly was out of it...probably sleeping from all the meds to try to get control of her nausea. At least she didn't throw up anymore after we got upstairs.

Saturday, May 2, 2009 - The filter came out with no problem at all. Kelly had to take it easy for 48 hours after the surgery. They put it in through the groin but took it out through her neck. She saw Dr. Williams, her internal medicine doctor. He referred her to someone he works with in the pain clinic. She was glad he did that. She's been going to physical therapy and has a lot more energy this week. Her stitches were taken out yesterday by a dermatologist. She had a bunch of blemishes on her face and arms. The doctor said they were pre-cancerous and so burned them off. Not much else going on. Her wound from falling on the bike is ugly looking. It's taking a long time to heal. She hasn't been back out on her bike yet but wants to ride it soon.

Thursday, April 23, 2009 - I sat and updated the website last night but it didn't save anything that I typed in, which is irritating especially because I had not done it in so long. So here I go again. Things were going along okay. Kelly is slowly moving around and doing physical therapy now at MedSport, which she likes. She had layed in bed for a few days last week; all day long. She admitted she felt depressed but after much coaxing by me and Dave, she got up. Then she told Dave she wanted to buy the recumbent bike that they looked at recently. She went and bought it, took a couple spins in front of our house and we all decided to go for a bike ride (Nikka included; that lovable Min Pin; the only thing that saves her is she's cute). We had been riding about 5 minutes and Kelly took a spill. She landed in grass, thank goodness, but as Dave and I ran towards her we could see her leg was bleeding and as we got closer we could see it was a big gash in her leg. She brought a towel to put on the back of her seat which we grabbed and put over the wound to try to hold it together. A man came out of his house to see if he could help. He ended up taking my bike and Kelly's while Dave rode home (dragging Nikka, poor thing) to get the truck. They ended up putting in 10 stitches in her leg. The first doctor who came in Kelly said had a few too many Red Bulls. He was really wound up. He said he would put staples in and put her on an antibiotic. The PA that came in felt she only needed stitches and no antibiotic because she was already on Penn VK. They did give her a tetanus shot though. It was the fastest ER visit we have ever had - only 3 hours. Amazing!

Tuesday, March 24, 2009 - As if Janice's passing wasn't enough, Kelly fell on her way into our house when we came back from the funeral on Thursday around 5:00. I went in the house with the multiple bags that Kelly carries and as I was walking back out to help her I heard a scream. Kelly fell. She was laying on the garage floor with her head against the side of the tool box. She wasn't crying in pain or anything (Dave and I took care of that). Dave lifted her up by her arms and she crutched her way into the family room to a recliner. We called the ambulance because we were afraid to move her not knowing if she broke anything. They put her on a body board and took her to ER. Luckily, no bones were broke and her hips did not dislocate. Thank God! We were really praying, let me tell you. This really, really upset me and Dave. I kept on wishing I had been behind her, she had not gotten out of the car. Dave was yelling at me asking what I was doing while he was in the garage and saw her fall. A lot of blame going on at that moment. But Kelly says she dropped her purse (which she should not have been carrying; remember she is on crutches) and she tried to pick it up with her crutch. She lost her balance and down she went. They decided to admit her for pain control even though nothing was broke. We were wheeled to her room on 8A (thank goodness) at 3:15 a.m. I slept in my own bed for the first time on Sunday night. We had to go back to the bed pan while in ER and the first night in the hospital (yuck!). Then PT came in and tells her she has to start moving. She got up and started moving - she's a trooper. She feels like anytime she gets up her pelvis is moving. The first PT person she saw said she had a back injury in the same place (lumbar area) once and she could have sworn that it was broken. She said it was a bad muscle strain/sprain and it took about 2 weeks for it to get better. She's back to taking very tiny steps and we requested that a hospital bed be brought back to the house so she doesn't have to climb stairs. We just cannot seem to get a break although I would definitely say no bones being broke is a break and her hips did not dislocate. This is a sure sign that she and her bones are getting stronger. Thank God!

Tuesday, March 17, 2009 - It is with a saddened heart that I am telling everyone that Dave's sister, Janice Byars, passed away on Sunday, March 15. She died peacefully surrounded by several family members. She was diagnosed with leukemia in January 2007 and underwent an unrelated bone marrow transplant about 11 months ago. She fought a tough battle. Her condition deteriorated quickly. She developed a blood infection, staph infection and pneumonia. Kelly was actually admitted to the hospital on Thursday because of a fever. When I went to see what was going on with Janice on Friday, they were trying to put a line into her jugular so she could get blood and platelet transfusion. They were unable to place the line in the jugular so they went into the groin area. By Sunday around 4:45 am, they were moving her to intensive care and put her on a ventilator. We received the call from Dave's mom around 10:00 and went straight to the hospital to see Janice. After seeing Janice, we went to see Kelly to find she was being discharged. I informed the nurses I knew as I went down the hallway that Kelly's aunt was not doing well and not given much hope to live. Right away they said, she can go to see her. She is being discharged so you can come back to sign the paperwork. Here I was thinking I needed to be guarded as far as giving this information to Kelly but then I knew it was the right thing to do. To let Kelly know and let her make the decision as to whether to go to see Janice. Of course, Dave and I walk in all teary eyed to let her know about Janice's condition. Right away she starts crying. The nurse comes in to say she's sorry and that Kelly can go see her. Kelly, of course, wanted to go see her to say goodbye. She told us later that she would have been mad at us if we didn't tell her. She wanted to say goodbye. I cannot tell you how touched I was with Kelly. When we wheeled her in to Janice's room in intensive care Kelly got up on her crutches and stood by Jan's bedside to say, "Janice, this is Kelly. I wanted to tell you I love you." What can I say. Kelly is so strong. I couldn't say anything when I walked in. I could only hug Heather and feel her pain. It was later that I could talk to Janice with the hope that she knew I was there and everyone else who came to be by her bedside that day.

Thursday, March 12, 2009 - I am totally mixed up as to which day it is. Today was the first day I went back to work (even though I worked on e-mail from home Monday through Thursday) and Kelly ended up in the hospital again by the end of the day. Dave was ill beginning Monday so I stayed home to care for Kelly because I didn't want him going near her having the flu. On Tuesday night, she began running a low grade fever. The highest it got was 100.6 but remember that we are supposed to notify the BMT team whenever it goes above 100.5. On Wednesday, we call the BMT clinic but the peds team did not have clinic that day so we went in to a see an adult BMT doctor we have not met before. He's been with the BMT team for 2 years. I can't remember his name even though I saw his UM badge but he had a long first and second name (I think he is Korean). Anyways, her blood counts seemed fine; white blood cell count okay, ANC okay, they actually looked good when I saw the printout. They did blood cultures though, which we won't know about until 3 days from 3/11. So he decided to give her a broad spectrum antibiotic and sent her home. By the time we got to the cancer center her temp was only 99.3. She had taken Tylenol 8-hour pills at 6:30 a.m. and we saw them around noon so the pills were definitely working. We came home and she went straight UPSTAIRS to bed. I cap UPSTAIRS because most hip surgery patients don't go upstairs so quickly after surgery but my Kelly is so determined and she likes to be in the "king" bed upstairs rather than the hospital bed that was delivered. As the day progressed, her temp was beginning to rise at nighttime, which happens a lot with people. She was sleeping when I left for work but called me around 8:30 saying she had a temp of 101.6 so she called the BMT clinic to get the peds doctors this time. The first blood draw produced a very low red blood cell count so that the doctor would not see her until they did another blood draw. Turns out the first draw was a false reading (don't really know why), so the second one came out fine. This just kills me (can't imagine how Kelly feels) because it is so hard to find a vein to draw blood from on her. It only took 3 times the tech said that drew her blood from the previous day. It's almost like they need to put a port in her again but I know she doesn't want that because it limits her water/swimming activity and she is hopeful to be doing that again soon. This girl just won't quit. So the doctors then send her to ER. This is the best way to get the battery of tests they need done quickly. They did an x-ray of the hip; it was fine. They did a CT scan of her head; nothing abnormal again as far as all the different sensations she's having on the left side of her face and ear. She feels the bruising around her leg looks different (bluer). They brought the residents in who were on the hip surgery. They felt her incision looked fine. Because of her stiff neck and head/ear problems they decide to do a spinal tap. She insisted, as my sister Danette did (thank you again for being with her, Danette!) did and they finally took her to do a spinal tap using an x-ray. So she's been through a lot today even though Dave and I both feel it's probably a virus. We are not in Kelly shoes. We do not know how she feels; the pain she feels; what her mind is going through. I think her mind is worried about getting an infection due to the hip surgery so she's a little paranoid. So you have to do what you feel is necessary to ease your mind. She wanted the doctors to do what they do best and that is to rule out infection and anything else that may go on with a bone marrow transplant patient before she would feel okay to go home. She definitely feels this hip surgery is so different from the first one. She did not have the brusing or swelling with the first surgery. We are hopeful the doctors will agree that it's just a virus and send her home tomorrow after pumping her full of antibiotics. All I can say is this stuff is exhausting. It's almost like when I step into that hospital I go into the tiredness mode. I felt really bad leaving her tonight in Mott but she was put in a room that did not have a couch and no recliner that would lay flat. So, unfortunately, I had to leave but I told the nurse that she would be calling for help to get in and out of bed with her leg. I just hope they get to her in a timely manner because she'll do it without help if she can't wait.

Monday, March 8, 2008 - The surgery itself went well. They told Kelly they could do a nerve block in her groin area that may help with the muscle spasm problem she had last time. She elected to do the nerve block but by the time she got into the operating room, they were running behind and Dr. Urquhart told Kelly that the nerve block really wouldn't do much for her and he didn't think she should get it. Since they were running behind, I think she felt pressure to not take it. They ended up giving it to her after the surgery. Dr. Urquhart came out to see me and Dave and said it went well, she should feel a lot better as far as pain once it heals and that he didn't have to put a cable around this one like he did the right one. So back in the waiting area we went to wait for her to get into recovery and them call us back there once she started to wake up. We waited and waited until around noon. I asked admitting staff for an update on Kelly since it had been 3 hours since we saw the doctor. She said, "Well, actually it's only been 2 hours and 40 minutes and they would be calling us as soon as she's coming to so we would have to wait." How rude! Dave started back to work on afternoons the day before (Monday) so he was anxious to see her before he had to go to work. He went in twice to try to get an update. The second time a staff member came along with him to say, "She's already been taken to her room." We could not believe it. Next time if it seems like it is taking too long, I will ask the desk staff to page the charge nurse to get an update. That was ridculous.

Monday, March 2, 2009 - Tomorrow is a BIG DAY! Kelly's 3rd anniversary of the bone marrow transplant and her left hip replacement surgery. We are so looking forward to the surgery tomorrow. We hope it goes as well as the first surgery only 3 short months ago. Her surgery is scheduled for 7:30 a.m. and we have to be there at 5:15 a.m. So an early rise tomorrow but it will be worth it! Keep the well wishes, thoughts and prayers going! We thank EVERYONE for their support!

Sunday, February 15, 2008 - On Monday, the doctor called to follow-up on her visit to urgent care for hydration to ask how she was feeling. She was complaining that her left jaw hurt, her teeth hurt, etc. The doctor told her to come in. She saw Dr. Yanik and he said sometimes when a person is having nerve ending type pain, it could be shingles. So he gave her an antibiotic to start taking if she started feeling worse and sent her home. By the time she and Dave got home, her right leg was hurting similar to the feeling she had when the blood clot developed so back they went to the hospital; this time to the emergency room. Luckily, they did a scan of her leg right away to determine that she did not have a blood clot. Thank goodness. When the tech wheeled her back, he put her in the hallway. He said things were crazy in the ER and that the hallway is really the waiting room fo rher (she was on a bed). So dave and I sat in wheelchairs by her and waited and waited and waited. Finally, Dave told me to just go home around 8:30. They didn't get home until 3:30 a.m. Kelly was worried that the pain was coming from her hip being disloated so she wanted to get an x-ray. Everything was okay, thank goodness. On Wednesday she saw Dr. Bockenstedt and she got Kelly really upsest. Dr. Bockenstedt said she didn't intend for the filter to stay in her as long as it has been in. Kelly was so upset with the poor communication between the doctors that she started crying. We talked about it and came up with the conclusion that the doctor who put in the filter had a better approach as far as when the filter was coming out. His plan was for it to stay in until after the left hip was replaced, which is supposed to happen March 3rd. Dr. Bockenstedt scared Kelly by saying it may not come out. We have faith that Dr. Reckenwald knows what he's talking about since he's the one that does this type of surgery all the time.

Sunday, February 8, 2009 - Kelly said yesterday, my hip surgery is less than a month away. That it is...March 3rd will be coming around in no time. We can't wait. She had a rough week this past week. Very tired and her left hip has started hurting her more so she stayed in bed most of the week. She was having some pain in her right shoulder where the Hickman used to be so on Friday at 3:30 she decided to call the BMT doctors and they told her to go in to urgent care. They gave her hydration and an xray which didn't show anything wrong with her shoulder, thank goodness. She was up and around some yesterday but so far today has stayed in bed watching TV. We finally had a break in our cold, cold weather. It actually was pushing 50 yesterday. Very nice.

Thursday, January 15, 2009 - Kelly is doing very good with recovery from the hip replacement surgery. She started physical therapy at MedSport this past Monday. She's going on Monday and Wednesday each week. Yesterday, her therapist really worked her out. She said her legs felt like jelly afterwards. Her right hip is feeling so much better though. Now it's her left hip causing her the pain. This past Sunday she was sitting at the kitchen table working on one of the art therapy masks and said, "This is the week I was supposed to have my surgery. I don't think I would have made it. Dr. McCort saved my life." It's amazing what this surgery has done for her in less than a month. We are so looking forward to March 3rd. Kelly's quality of life will improve tremendously. It's about time. And with the PT that she will be getting, hopefully, her back will stop giving her problems as well.

Tuesday, December 29, 2008 - Kelly had to lay low for 2 weeks after her hip replacement surgery so we had the family over our house for Christmas. She went yesterday to have the staples removed. She also saw the bone marrow transplant doctor. They have taken her steroids down to 4 mg/day. The other eventful thing that occurred yesterday is they scheduled the date to have her left hip replaced. It is March 3, 2009. This date is the 4th anniversary of her bone marrow transplant. How appropriate to have the surgery on that date. She will now have 2 more weeks of physical therapy at home and then start going to the med sport facility for physical therapy. She's doing great!

Tuesday, December 19, 2008 - Things have happened so fast. Kelly had her right hip replacement surgery on Tuesday, 12/16. She and Dave went to the education class last Thursday, 12/11. On Monday, 12/15 they called to see if Kelly wanted to have the surgery on 12/16 rather than 12/17. Of course, she said yes. The surgery went very well and she is already home!!! I cannot believe how fast this went. She was in a lot of pain the first and second days. She was having muscle spasms in her right leg in recovery. So much so that they called me in because she was asking for mom. We were only supposed to go in for 5 minutes, one at a time, but they let me stay back there because I was able to calm her down by rubbing her leg and telling her to take deep breaths. The spasms continued the next day and I was told by Joanne, her nurse, I should not be rubbing her leg because it could cause clots to break off so I immediately stopped rubbing and told her no one in recovery told me not to rub. One of the nurses down there was rubbing her leg also. One thing I've learned from this is that each floor has their specialty and they are the experts. Kelly was on floor 5 in University Hospital this time. The nursing staff was excellent and they know their stuff. The problem was with the doctors. They wouldn't give her anything additional for pain because she takes so much pain medication plus valium, ativan, so many meds. The ortho doctors kept on saying they would send someone from the pain team up on Wednesday. The doctor finally showed up at 6:00 p.m. and asked some tough questions and said he cannot do anything; he can only recommend something to the ortho doctors. He was in agreement with us that she needed some type of muscle relaxer and recommended Tramadol. It helped Kelly tremendously. Prior to that, Kelly had to go through some physical therapy with Krystal. She was showing her bed exercises and how to get in and out of bed. I was so amazed with Kelly. Here she was in so much pain. i didn't expect her to get out of bed and I don't think that Krystal expected it either. But Kelly pushed through the pain and got up on her feet. She is amazing!!!

Tuesday, December 9, 2008 - Everything went very well yesterday with the filter placement. We had to get up bright and early to be there by 6:00 a.m. We were home by 1:30 p.m. Now we look forward to the big one next Wednesday. We go to education about the hip surgery this Thursday. It's a 2-hour class.

Friday, December 5, 2008 - Today is my birthday so I took off of work to be home and go with Kelly to her pre-op appointment for the surgery to replace her right hip, which will occur on Wednesday, December 17th. She/We cannot wait. Yesterday, we saw the doctor who will be putting a filter in to stop any blood clots from passing to her lungs. The filter is put in the groin area and is retrievable. There are some permanent filters but they could prompt more blood clots so Kelly's hemotology vascular doctor wants to be able to remove it. The filter will be put in on Monday, December 8th, at 7:30. The surgery will take 1hr and 15mins. There is just a small incision made so that's good as far as healing. We will know more about the hip surgery when we go to a class next Thursday that lasts for 2 hours. Kelly can't wait to get this one done and move on to the other one. Keep the prayers going that it heals well and gets her mobile quickly. She is one strong fighter so I expect things will progress quickly.

Monday, November 17, 2008 - Exactly a month away - December 17th is the date Kelly is scheduled to have her hip replacement surgery. Thank goodness! I just called and she first said the first date available is January 28th. I explained we already have an appointment with Dr. Goulet for January 15th but we were hoping for something sooner because of Kelly's graft vs. host and blood clot issues. She then said, let me see if I can find something earlier. She saw something on his calendar for 12/17 that she said he doesn't do so she put Kelly in and said she would need to talk to him about it but didn't see a problem. We'll get the paperwork this week. Yeah!!! We are very happy!!!

Tuesday, November 11, 2008 - I went to my doctor last Thursday due to a cough I've had for a month that was very deep at times and produced green mucus in the mornings. I went because Dave and Kelly kept bugging me. It occurred to me while in the shower that day...we should see if another doctor at UM would do Kelly's hip surgery. I mentioned it to Dr. McCort. Immediately after I mentioned it to her she started asking me questions about Kelly regarding the transplant and the steroid she's on, etc., and then she turned around to say, "I emailed a colleague of mine who I would want to do hip surgery on my daughter if she needed it." She said that she wanted him to know Kelly's history in case he felt it was too complicated of a case and that she would get back to me when she heard from him. On Sunday night, I missed a phone call only to find out that it was Dr. McCort. She said she needed further information about Kelly and that I should email it to her. When I went into my e-mail, she sent a message to me saying Dr. Urquhart said he was "Happy 2 squeeze her in." OH MY GOSH! Thank you Dr. McCort! Now we don't know what if happy 2 squeeze her in meant into the clinic or into the surgery schedule. At any rate, someone from his office called Kelly yesterday and she has an appointment to see him on Thursday at 11:30. Now we have our fingers, our toes, every part of our body that can cross crossed with the hope he can do the surgery soon. Kelly is in soooooo much pain right now. She started writing a letter to Dr. Goulet and was reading it to me last night while we were laying in bed (my bedtime story) and she started crying when she was reading the part where she explained the amount of pain she is in. I feel so bad for her. We are so hopeful he can do it immediately but even if he can do the surgery in a month, that's better than waiting until January.

Wednesday, October 29, 2008 - Kelly went to the BMT clinic yesterday. Dr. Levine said he can tell that Dr. Goulet has not opened his e-mail and that he's paged him also but he didn't hear back from him. He figured he must be out of town. The BMT team are more than willing to be an advocate for Kelly to get her surgery sooner but that's all they can do is talk to Dr. Goulet. Dr. Levine said we have other options like going to another hospital for the hip surgery - St. Joe's or Beaumont. The only thing I see wrong with that is by the time we get an initial consultation, take x-rays, etc., January will have rolled around anyway. We have heard such good things about Dr. Goulet that we really do want him to do the surgery. After the clinic visit we walked over to Dr. Goulet's area to find that he was in clinic yesterday and that he would probably answer his pages in the afternoon. Dr. Levine e-mailed me in the afternoon saying he talked to Dr. Goulet and there is nothing he can do to get Kelly in sooner other than make her first if someone cancels. Darn! We are so disappointed. So that's that. I'll let you know if we decide to pursue someone else doing the surgery.

Monday, October 23, 2008 - Kelly saw Dr. Goulet on Tuesday. She and Dave waited 4 hours to see him. He was in the room approximately 10 minutes and he told Kelly she could probably have surgery in a couple of weeks. His scheduler came in and said the first available appointment was January 3rd. They told her what Dr. Goulet said but all she said was I'll call him back in here and he'll tell you he can't do it any earlier. He has appointments available sooner but they are for trauma patients. Kelly was in tears. The scheduler handed her a box of tissues and walked out the door. How can someone be so coldhearted. But I guess you have to be when you have patients in pain who want surgery sooner rather than later. So Dave calls me on their drive home to let me know what happened. I e-mailed Dr. Goulet and copied Dr. Yanik and Dr. Williams. This is what I wrote:

Monday, October 20, 2008 - Kelly visited the vascular doctor last week and she said it was fine with her to proceed with hip surgery. This week she goes to see the orthopedic doctor and then next week bone marrow transplant doctors to get the go-ahead with all the doctors for surgery. Kelly cannot wait. She's in a lot of pain. Speaking of pain...we have not heard back from the pain clinic since she answered all those questions. Maybe they talked to the BMT and they said not to do anything until after hip surgery. This is us thinking this. One night, Kelly was sitting on the side of the bed. She looks up at me with puppy dog eyes and says, "I am so sick and tired of this." Then she started crying. It just breaks my heart. I wish I could do something to make her life better.

Tuesday, October 7, 2008 - OH MY GOSH! For the first time I could kick myself for not being present at Kelly's appointment with the pain clinic doctor. She's had multiple appointments with them but ended up in the hospital on dates she was to see them. This doctors says she is so miserable because of all the pain medication. He said she was taking enough pain medication to kill him, his nurse and Dave. He wants her to come in tomorrow to do a 500 question questionnaire and possibly go in to St. Joseph's Mercy Hospital so she can be observed. This just makes me angry and sick to my stomach. It makes me sad that we didn't go there sooner. Of course, you never know how things will be unti they actually start changing her regimen of pain medications. I am sure a lot of doctors have that "I am great" image or hallucination. So we shall see. But if he can do anything to make Kelly feel better, I will be so, so, so grateful. Dave said something about her going swimming and over doing it and he said he believes you can never get enough of a good thing. I just hope and pray he can do something for her. He told her to do a Google search for buprenorphine & chronic pain and also sedatives & chronic pain. I did this and it came up with a lot of medical terminology so we will see if we can make sense of it.

Thursday, September 22, 2008 - Not this past weekend, but the weekend before, Kelly ended up in the hospital. It was Friday, 9/12, I had Kelly to ER and another daughter driving away from Hurrican Ike (that story to come later). Kelly started vomiting and couldn't quit so into ER she went. Dave was adament about them catching things before they go to far and luckily we had an ER doctor who listended. The stay was only 3 days. She was discharged on Monday. But this was not without concerns. From a CT scan of her lungs they felt she had the start of an infection so she was put immediately in the ER on an antiobiotic, which they continued when she was on Mott's 7th floor and she is also taking an antibiotic for 2 weeks from discharge. Dave and I believe that the antibiotic did make her feel better. But an underlying problem that has existed for years now is constipation from all the pain meds and not being mobile. We worry so much when she just lays in bed but know that she is probably in so much pain that it hurts to get out of bed. Laying in bed doesn't help the pain meds causing contipation so she feels nauseous until she becomes sick. At least it was only 3 days. We actually were able to go up north this past weekend. We were supposed to go the weekend she ended up in the hosptial (I even scheduled 2 vacation days so we could stay longer) but that changed on that Friday. It was beautiful weather and she kept saying how this time of the year is her favorite. She just loves the temperature, the leaves changing, cider mills, Halloween, everything about fall.

Thursday, September 4, 2008 - Kelly felt like her mouth was flaring (gvhd-wise) so she called the clinic and Dr. Yanik made her go up to 12 mgs/day on the steroids for a week. He told her to back down to 8 mgs/day after one week and just stay on it. She can't wait to get her hip(s) replaced. She can't wait for the day when she has no more pain. She did something to her back about five days ago. When I rub her back, the knot seems to go away so we hope it's muscle and not another compression fracture. She doesn't go in to see the blood clot doctor until October so they are pretty much making her wait 6 months since it happened. She says she sometimes can feel it in her knee after she sits in one spot for a while. Like when we went to see Wicked. We decided to switch seats to an area where she could stretch out her leg. That play was awesome. I bought tickets as a present in celebration of her 3rd anniversary of the transplant because she really wanted to see it. We highly recommend it.

Wednesday, August 13, 2008 - This past week has been great! Amy flew home last Tuesday and then her boyfriend Carlton flew in on Friday. We had a very nice time getting together with family while they were here. Kelly & I picked up Amy at the airport last Tuesday and then went to Meemaws & Peepaws (my mom & dad) house for their great southern breakfast (which was around noon). My brother Larry was there also. After that we (me, Kelly & Amy) went to 12 Oaks shopping until Kelly couldn't stand it no more and then we went out to eat. We arrived home around 9:00. On Thursday, we all went to get manicures and pedicures together. It was a lot of fun. Amy & I picked up Carlton on Friday and went by my parents house once again for breakfast (Larry was there also). On Saturday we went to the Tiger baseball game. The Tigers won and we stayed for the great fireworks show afterwards. We went to Greektown prior to the game for dinner at Pegasus. Carlton really wanted to see downtown Detroit. We had good seats at the game in the 4th row of right field. It rained on us a little in the beginning but then it was nice. It was very chilly though and the macho guys did not go prepared. Of course, Amy & Carlton are used to 90-100 degree weather in Houston. It was barely 70 in the stadium. So Kelly came prepared and us women shared our warm clothes with the guys. Thank goodness for her handicap parking sticker...we were able to park very close to the stadium. On our way down the stairs, she hit her head on a wire thing that was protecting the light. It was so hard it brought her to tears so I was a little worried and have been ever since. She's had a headache a couple of days. I tried to get her to call the doctor and just go in for an x-ray but you know how that goes with a 28-year-old. You can give them advise and it's up to them to act on it. On Sunday, Ruth, Austin & Grant and Amy's friend, Julie, came over for dinner. We all played the WII. It was fun. Dave & Carlton drove some golf balls on Monday evening (I went to work on Monday because a co-worker started her vacation and we had to have coverage). On Tuesday morning, I dropped Amy & Carlton off at the airport around 7:30. She called me around 11:00 to say the airlines was asking for volunteers to change flights so she and Carlton went to the counter. They had overbooked the flight. For volunteering they both have $300 worth towards flying with Northwest airlines in the future! I was soooooo happy for them! They kept on talking about coming home for Christmas. I don't know if that will work during Christmas but at least they have it. Amy's friend Julie, who joined us for dinner, asked Amy to stand up in her wedding in November. She is having the wedding in Mexico so Amy and Carlton will be flying there so maybe they can use it then. That made my day!

Wednesday, July 23, 2008 - I just logged in a different way to update the computer because Dave bought a new one that we pretty much are not allowed to do anything with except look at the internet. This allowed me the opportunity to see how many people view this website daily and monthly. It's not only my friend Charlotte but many people who visit our website. Thank you to everyone who visits to keep up with Kelly's progress or just discover it from doing a search on the internet. For those doing a search, I hope you obtain some useful information. You all keep me motivated to updating this journal. Kelly's friend Julie (Motika) from elementary school came to visit this past Sunday. She said she also looks at the journal periodically. She lives in Kansas. It's so nice that we can reach so many people across the country with this journal. There have been people in the UK who have contacted us after reading about Kelly. THANK YOU EVERYONE!

Thursday, July 9, 2008 - Thanks to my dear friend Charlotte from Stroh's who I miss having lunch with and keeps me dedicated to updating this journal...I am updating this journal. Thank you, Charlotte. There is not really a lot to report though. I went to clinic with Kelly last because Dave was on a trip down south with his cousin Burt. Seeing the kin folk and taking a class. Anyways, Dr. Levine took her steroid dosage down to 16 mgs. every other day, which he felt was equivalent to 8 mgs. every day. He said in one month, they would go down to 12 mgs every other day, which is equivalent to 6 mgs every day. This is where they will stop because any time they go below that, she flares with the GVHD. This has made her tired on the days when she doesn't take the steroids. She has been more active in the past few days than previous. She went swimming yesterday. The previous time she went swimming, she was very, very tired. Because of the steroids we guess. She can't wait to have her hip replacement surgery. Probably another month away before they reassess the blood clot in her leg.

Saturday, June 14, 2008 - Oh my gosh! So much has happened in the past month but I am so, so, so, so tired of this. I can only imagine how Kelly feels. I hope I will cover everything. Kelly was discharged on Weds, 5/21, the day before her birthday. She went in to clinic as a follow-up to the discharge on Tuesday, May 27th. They sent her for an ultrasound. Lo and behold, she had developed yet ANOTHER blood clot in her right leg. So they admitted her again. This time her spirits were better. She said, "I'm okay with this because I would have been put in the hospital tomorrow for the hip surgery anyway." So, they apparently sent her home on the wrong dose of blood thinners. They decided to have an adult vascular doctor begin to follow her progress. They basically wanted to just monitor the blood clotting meds and planned to discharge her on Friday. She wasn't even put on any IV meds. No pain pump, no IV hydration. So that was good. We went for a walk one day in the middle grounds of the hospital. At one point she started feeling weird so she stopped in her tracks, Dave went to get a wheelchair and we headed back to the room. She was discharged as planned on that Friday.

Sunday, May 18, 2008 - Forget It! The thrombolytic therapy as noted below is off for now. The risk to Kelly far outweighs the benefit. She would have to continue with the therapy she's on right now anyways, which is anti-coagulant drugs. The intervention radiologist visited us on Friday to let us know all of this. He can see that she still has blood circulating in her leg and that what he does would not make much of a difference right now. He says that the body will eventually begin forming more veins to get the blood circulating into the leg. She will still have to deal with a swollen leg at times.

Friday, May 16, 2008 - Now we have to decide on a therapy they want to perform on Kelly. Of course, it's ultimately Kelly's decision and for me it's going to be a hard one. Dave is all for it. Feels the risks far outweigh the benefits. It's call Thrombolytic therapy. Go to the following link to read up on it:

Tuesday, May 13, 2008 - When is enough, enough! Kelly is back in the hospital. She has a massive blood clot in her right leg from the groin area going down to her knee and most probably beyond. The CT scan wouldn't go beyond the groin or knee. They are giving her anti-coagulant medications to get it to break up and watch that a clot doesn't go into the lung. She is very, very sad and mad about this because she has been telling the BMT team for months now that she has tingling and numbness going down her leg so she feels it's been going on for a while. We've been told different stories that blood clots just come on all of a sudden and also that it could have been going on for a while. What she has is deep vein trombosis (DVT). As a result, her hip surgery is postponed. As I think of her laying there with yet another bump in the road to get over, I don't know how she does it. How does she get back that fight when she keeps on getting pushed down. I always say things happen for a reason. All I can say to make sense for this happening is at least it happened before the surgery.

Tuesday, May 6, 2008 - Dave, Kelly & I went up north this past Wednesday night and came home on Sunday. It was nice to get away. Kelly didn't feel the greatest the last two days and kind of just layed around. We went to see Mike's place (Dave's brother) in Caledonia. It was only an hour east of our place.

Saturday, April 26, 2008 - HAPPY BIRTHDAY to Ruth and Mackenzie (my sister and niece). We had a very nice celebration today at Danette's house. Bob made the usual great food for all of us.

Thursday, April 10, 2008 - The date scheduled for the hip surgery is May 28th. They said she would be staying on the orthopedic floor for 4 days. We have not seen the bone marrow doctors since we found out when the surgery will be. We will see what they say. Kelly goes to clinic next week. She has been feeling pretty good lately. She does constantly deal with the hip pain but she has been going to the Saline Rec Center to swim lately. She says her hip feels better since she started swimming. I can only hope that she continues to swim, her hip feels better, so much so that she cancels the surgery...wouldn't that be nice. They called her yesterday to go to ECP today but she has it on Monday and Tuesday so she didn't go.

Sunday, March 30, 2008 - Kelly made an appointment with Dr. Grazziano on Friday. She and Dave called me so that I could walk over from UMACC (where I work). We waited in the waiting room about 1/2 hour and was taken to a room waiting to see the doctor around 2:15. A first signal that we made the appointment with the wrong doctor was when they sent Kelly for x-rays. The x-rays were of her back. Oh know...we've been waiting for the spine doctor. Kristine, the physician's assistant (PA), who is extremely nice, came to talk with us first after us waiting in that room for 1-1/2 hours (Yes, we were actually in the room waiting to see the doctor for 1-1/2 hours). We told her that we were there because of Kelly's hip pain and thought the appointment was made with the wrong doctor. Dr. Grazziano came in and said, in fact, he is a spine doctor and her MRI did show further deterioration but she would have to take that up with the hip doctor, Dr. Goulet. I asked if there was any way possible for us to see Dr. Goulet and he said he would see if he was in the back and ask him to come in to see us. Thank goodness he did. Dr. Goulet was our hero that day along with Dr. Grazziano and Kristine. He said he just finished surgery so we were lucky that he was there and able to come in to see us. BUT HE DID! So now Kelly tells him she wants to go through with the hip replacement. He was agreeable to that based on the further deterioration of her hip and said her left hip would need support at some point but that would come later. His scheduler was not available for us to make the appointment for surgery so Kelly is going to call her on Monday. Kelly just wants to be out of pain with her hip so cannot wait to get this done. Of course, the complications are infection and healing. For her it will take longer to heal. She always has the threat of infection because of all the immuno-suppressant drugs that she is on. I will let you know after Kelly talks to his scheduler when the operation will take place. For me, it's very scary but I know Kelly but be hurting so we have to proceed. Her quality of life has not been great lately so we have to move forward even though it's scary. I want to make perfectly sure that the bone marrow doctors will be on board with this surgery. We may have to be put on 8A again after the surgery so they can take care of the bone marrow issues while she is recuperating from the hip surgery issues. I guess you see what I mean by it being so scary.

Wednesday, March 26, 2008 - Kelly came home from Chicago feeling tired but had a really good time. She only had Thursday to relax before Amy and Carlton flew in on Friday. After landing at 1:30 on Friday, they drove to our house to unload and then the snow started. That didn't stop them...Carlton wanted to see Michigan Stadium so off the go driving in the snow during rush hour in Ann Arbor. He noticed a tennis game going on and they decided to stop and watch the game for a while. The plan was to eat at Mac's (our neighbors restaurant in Saline) and we were going to meet Burt, Cathy, Sophie & Seth who were driving in from Chicago to spend Easter with family. We had a very nice dinner and good conversation. On Saturday, we decided to go to the NorthRidge Church service at 3 in the afternoon. We had heard a lot about it and we were not disappointed. Later that evening we just hung out at home watching movies. On Sunday, we had my family over for Easter and to meet Carlton. Unfortunately, my Mom & Dad were sick so were not able to come. On Monday, Amy, Carlton & Dave visited Audrey & Earnest (Dave's parents) and they flew to Dallas around 7 p.m. They had to drive 4 hrs. to Houston so they didn't get home until 3 a.m. and then had to go to work the next day. Kelly had a clinic appointment on Monday so I went with her because she didn't want to walk on her hip so I wheeled her around. She saw Dr. Yanik and he took her down on the steroids again because her counts are still excellent (on the high end of the normal range, UNBELIEVABLE!). Her mouth and skin have been looking better. So now every other day she takes 16 mgs. one day and then 8 mgs. They felt she has a sinus infection going on so they prescribed yet another antibiotic. She had ECP on Mon & Tues. She had a dexa scan to measure her bone density on Tuesday afternoon and and pulminary function test today. On Friday, she goes to see Dr. Graziano for her hip. This is a result of Dr. Williams calling me to say she needed to follow-up. I know it must hurt her because she doesn't really want to walk on it and today she asked, "I wonder how long it would take to get hip surgery." Now, this is scary. I know Dr. Yanik is anxious to get the results of the bone density scan. Hopefully, Dr. Graziano will have the results on Friday.

Monday, March 18, 2008 - What a weekend! Plans were to go to Chicago for St. Patrick's Day. How quickly things can change. Well, things don't change that quickly because Kelly was in bed since Sunday, rarely getting up. She had flu symptoms - nausea, night sweats (so much she said she changed her t-shirt at least 2 times during the night), achy all over, headaches, pains in the right side of her stomach. So, Dave called on Thursday. Clinic wanted her to come in. Her blood counts were really good (probably the best they have ever been). The doctors could not narrow it down to any one thing so they wanted to do a series of scans and wanted to avoid an ER visit so they told her that she should be admitted because that would be the quickest way for them to get the scans done that were needed to determine what was going on. At this point we told them how she was planning to go to Chicago on Monday. They felt the scans could be done by Sunday and so she agreed to be admitted, all the time saying, "I think this admission was a mistake. Watch, they won't do anything this weekend." She wanted to come home to take a shower and pack. While doing so, she felt something snap in her hip and we returned with her on crutches. At first, there was nothing happening but they did do CT scans during the night, they did get everything done and Kelly was discharged on Sunday. We arrived home around 6:30 on Sunday and she started packing. This girl is amazing! Heather came over around 10 on Monday and off they drove to Chicago to stay with Molly. Their plans were to come back tomorrow.

Monday, March 3, 2008 - Today marks the 3rd anniversary of the transplant. Congratulations, Kelly! You are so strong and determined to not let this GVHD beat you. I don't know how you do it but you are truly my hero. I love you more then words can say.

Sunday, February 10, 2008 - The past two weeks have been pretty good for Kelly. She was able to get together with Jenny one day and then last weekend, she and Dave drove to Chicago to stay with Burt & Kathy and go to the boat show. Dave kept mentioning it at least 2 weeks earlier but, of course, we cannot make a decision to go until that day. Kelly was trying to get a friend to go with her but being last minute, it was hard. I came home from work and said, "Kelly, you're feeling good, you have to do thing when you're feeling good. Just go with your Dad. Burt and Kathy will show you a good time." So we quickly packed her bags and off they went. I stayed home alone and I must say that I really did enjoy having my alone time. Kelly loves to shop and her mission was to find a long winter coat. Burt took her to a store he thought she would like and she did find her a coat. Then they went to the boat show but it wasn't long before Burt received a call that Seth (his son) hurt himself in soccer. Burt left to tend to Seth but Kelly and Dave stayed at the boat show. They had some booth set up that provided foot massages and they also sold orthodic inserts. Kelly ended up buying some inserts that were very costly but she said it really helps her hip when walking. It also helps her plantar facitis problem. Burt picked them up at 8 p.m., they went out to dinner and then hung out at Burt's house. Seth, I guess, injured his knee and they put him in a brace. I hear they are going to do an MRI soon.

Friday, January 25, 2008 - Last Saturday was one of the scariest (I started to say the scariest but felt that I was just as scared early on in this journey) day I've had so far. Kelly woke up seeming to be normal. I was putting away Christmas things and went downstairs to see her sitting at the side of her bed. She said to me, "I'm just going to lay down because I'm tired." I went in to give her a hug and she said, "I love you so much and I love Dad so much." I am not going in to everything here because Dave and Kelly don't want me to but what it boils down to is...upon discharge they prescribed Wellbutrin. We are certain that she had a reaction to Wellbutrin. She was kind of out of her head (unlike herself) for about 3 hours. I called the on-call doctor and, of course, he wanted us to go to ER but after talking to him I checked certain medicines to feel confident that Kelly had not taken too many of certain things. At that point we all huddled on the bed (me, Kelly & Dave) and pretty much stayed that way for 3 hours. When she finally came out of it, she said that it felt like she was in a dream. All of the medications this child has taken these past 5+ years has never resulted in what I saw last Saturday. It was very, very scary to us. The doctors all agreed that the Wellbutrin was not good for Kelly. On Monday, Dr. Yanik saw Kelly and told her, "Kelly, I only do this probably once a year. I am going to give you my cellphone and office numbers so that if ever you need to talk to me, you just give me a call." Kelly, having the sense of humor that she has said, "It's the beginning of the year so you have a long way to go if you just do it once a year." That's my Kelly. She's always been able to have a sense of humor throughout this battle. She is my hero. The poor girl is still showing signs of GVHD on her skin. The places where she broke out are still apparent but are drying up. It's like on her left side, in her ear and in her eye, she has GVHD. Dr. Choi told her that the constant watering in her eye was GVHD.

Tuesday, January 15, 2008 - The GVH for Kelly has not subsided. She went to clinic yesterday and told me that she feels so bad that she thinks they will go up on the steroids more. She said that she just wants to feel better and became teary eyed, which, of course, makes me teary eyed. Deb came in first to go over how things were and then came back to say that she should just check in for that special order IVIG that she was getting so that she didn't have to wait for them to come up with a plan. I went ahead to work because the IVIG was going to be a long infusion and thinking that Dr. Yanik and Deb would not come to talk to her until mid-afternoon. They came out to get her before she was in infusion, which made me feel bad for leaving. They took her back into a room to talk to her about "the plan." Dr. Yanik said that her life is like a wave. She keeps getting hit by the wave and doesn't get over it. Kelly asked if she was ever going to be over the GVH issues. He said he has patients who are 15 and 10 years out of transplant who have chronic graft vs. host disease and they occasionally have flairs. He said that sometimes the GVHD gets tired and doesn't flair for a while but it's always possible for it to come back. So that was encouraging for us, especially Kelly. They decided to NOT go up on the steroids but to take them down to 20 mgs. and give her Rituxin for the next month; once/week. He also gave her things to help with the GVH that is so bad in her mouth. Her poor lips had red-like sores all on them yesterday. When the doctors look in her mouth, they say "ouch," and that it must be painful. My poor, poor Kelly. Can't she get a break? She saw Jane, a psychologist, last week. Jane gave her 3 things to do before her visit tomorrow. I believe that Kelly was able to do ALL of them. Kelly needs to try to keep in contact with friends and family more often and that was one of her goals this week. She did it. She is amazing. I can't imagine what it must feel like to not want to get out of bed because of pain or fatigue but make yourself get up and do things. My Kelly is AMAZING! as are all people who are fighting cancer diseases.

Sunday, January 6, 2008 - We are not off to a good start in 2008. On Wednesday, Kelly went to ECP. I am not sure what exactly happened but I think she started feeling nauseous early on and they gave her an Ativan, which put her to sleep. When she woke up, she started vomiting. They took her to the urgent care side of the infusion room and decided to admit her. She was having the same chest and abdomen pain that she did when they decided to remove her gall bladder. I arrived after work on Friday to find that Kelly's liver enzyme levels were extremely elevated. They did an ultrasound around 8:30 that night but we still don't know the results. The doctor thinks a resident may have viewed the ultrasound and needed to ask an attending physician about them so we probably will not hear anything until Monday. Yesterday, the liver counts started coming down, not to normal range yet but at least they are coming down. Kelly has been so depressed. She'll just be laying there and will start crying. We wanted the doctor to have a psychologist visit her on the floor so someone stopped by on Thursday and Friday. Dave said they told her to make two goals for herself and to try to accomplish her goal. I believe that worked yesterday. When I arrived, she was down in the 7 Mott art room. She wanted to join in with a handful of others to make a time capsule so she was looking through magazine and cutting out pictures as reminders of the year that passed. I told the lady running the activity it was such a good idea because it reminds you of all the things you did do during the year and that it wasn't all just at the hospital seeing doctors. So I was happy that Kelly joined in and hope today she gets up again to do something in the art room. Ruth brought us lunch from Noodles & Co., which was very nice. The art room closed at 4 so we all went back to Kelly's room. Ruth and I chatted away while Kelly cut out and pasted pictures to the box. Her mouth is still so sore that she told Ruth, "Sorry if I'm not talking but my mouth hurts if I talk." Dr. Choi feels her mouth has improved since she saw it on Friday, December 28 at clinic. When you look in her mouth, it looks like it has a coating of milk on it but Dr. Choi said it is actually raw. This is GVHD. Her skin is still very blotchy but it doesn't itch like it did before they upped her steroids. Today, Dr. Choi said there was no reason for her to stay in the hospital to wait for the ultrasound if she felt like going home she could. So we are off to bring her home today.

Wednesday, December 27, 2007 - We hope everyone had a nice Christmas. Kelly has not been feeling well. It started last weekend. She started breaking out and her mouth was bothering her. The GVHD is raising it's ugly head again. When they discharged her last time from the hospital, they took her steroid dose down to 4 mg and they added a dose of hydrocortisone. Seems like any time they go below 6, the GVHD comes back. We called the on-call doctor and he said to have her take 50 mgs of Benadryl and he would call back in a couple hours to see how she was feeling. We DID NOT want to go to the ER. She did seem a little better so he said that he was going to check with Dr. Levine the next day and would call us back. Kelly was using the steroid cream also for the itching. Dr. Levine told her to go up to 8 mgs/day by taking 4 in the morning and 4 in the evening. Kelly didn't want to do this. It was not until Christmas Day that she decided to go back up to 6 mgs. She has not been feeling good at all. She couldn't even participate in our gathering with the Hatfield on Christmas Day she was feeling so bad. I think she is really depressed also. This morning we were going to call the clinic but she says she's feeling better. She is still broke out on her hands and arms. The swelling in her mouth appears to have gone down.

Wednesday, December 19, 2007 - Kelly was discharged on Friday, 12/14. They ended up receiving the special IVIG order so they gave her a trial dose on Wednesday before giving her the rest of the dose on Thursday. On Weds they were having trouble with the IV and had to change the position of the IV. Other then that, things went fine; no reaction. She started looking a lot better by Thursday. She seems to be doing better this week as far as getting out of bed but she still has a lot of pain in her hip and back. Her appetite has picked up a little also.

Wednesday, December 12, 2007 - On Monday we were all going to clinic with Kelly to discuss her moving over to the adult BMT team because we are just not happy with the way she has been feeling so bad for so long and things just don't seem to be getting better. She was in bed all last week, complaining every time she got up that she was dizzy and nauseated. She wasn't hardly eating anything and when I was home I would force her to take sips of liquid. She woke up on Monday morning, took a shower, got dressed. I was downstairs when she yelled, "Mom, I'm puking." She had projectile vomited, trying to reach the toilet, but it went everywhere. We checked her temp, which was 99.3 at that time. When we arrived at the cancer center, while she was at blood draw, I went upstairs to let them know she wasn't feeling well so they put her in a bed right away in the infusion area. That's when they decided to admit her. She was puking all day long. At 11 p.m. they started an antibiotic (sirolimus, not sure of spelling). Dave walked in about 11:10 and noticed she was all red. I felt her and she was burning up. We called the nurse. Her temp was 102.7. It happened all of a sudden so it makes you wonder if it was a drug reaction because she had a low grade temp all day. They worked on getting her temp down and getting her comfortable. Her body was aching all over. Yesterday, she was feeling better.

Tuesday, December 4, 2007 - Kelly woke up last Wednesday morning with a headache that was so bad it caused her to begin vomiting and she could not quit. Dave called the BMT clinic but they wanted her to go to ER because they are able to get a work up on her quicker. I met them around 11:30 a.m. When she first checked in, she had a temp of 99.3. They did a chest x-ray because they kept hearing her croupy cough and a CT scan of her head to take a look at sinuses. This was already set up by the BMT clinic for Dec. 10th so at least we had that done sooner. Those both were negative so the doctors say because of the positioning of the headache (forehead, over right eye and going to the back of the head down to the neck) they suspect meningitis so they would need to do a spinal tap to rule that out. Right away we let them know that the last 2-3 spinal taps performed were unsuccessful in getting fluid so they had to be done by x-ray. The PA (Eric, which we really liked a lot) and the attending doctor said that x-ray would not take her until they attempted the tap themselves. We argued to try to make them see our point but it was useless. Both of them (yes, both of them) attempted the tap. The attending doctor was pushing so hard she had Kelly screaming and in tears. She finally stopped and said she would call x-ray. This was at 7 p.m. Eric came back to say the person on duty in x-ray was swamped and that the person coming on at 10 would be doing the tap so they proceeded to move us twice. We ended up in MedPath. Over there we were kind of in a holding pattern. They would not bother us unless Kelly woke up and needed something. Every time she would wake up she would vomit so we would be asking for nausea medication. The original goal when we arrived was to investigate the problem, get her comfortable and send her home. Yeah, right! This was the most frustrating ER visit we have had these past five years. At 11:00 pm I rang for the nurse to ask if she heard from x-ray as to when they would do the spinal tap. She said she would check with Heather and either she or Heather would come in to give us an update. At 12:00 I still had not heard from anyone so I went in search of Heather. She said there was a scheduling mixup, that she talked to the tech about an hour prior and they would be calling her soon to take Kelly. She did not get the tap until 2 a.m. At 3, they came in to say the tap was negative for meningitis and wanted to know if we wanted to go home or be admitted for pain and nausea maintenance. I said, "I don't know. Let's ask Kelly." Right away Kelly said she wanted to be admitted. At 6:30 a.m. Dave came in to relieve me. I went home to sleep until 11:30. I was packing things for Kelly and gave Dave a call but it went straight to voice mail. He called me back around 2:00 p.m. to say they were in the same room. I was thinking the same room at Mott that they constantly put us in but he said, "No, we are still in ER." I could not believe my ears. I was so mad. I called the BMT clinic and talked to a nurse. She said the problem was there are no rooms. I said what about the adult side. Still no rooms. I told Jennifer (the nurse) that it takes a lot for me to get mad but when I get there I am over the edge. I was crying at with what they put Kelly through with the spinal tap, that ER did NOT get her comfortable at all and she was still throwing up, and that she was not in a hospital room yet. Jennifer said, "Take a deep breath." I was thinking to myself, "Don't tell me to take a deep breath. You have no idea what this is like." but I didn't. Anyways, Kelly was discharged yesterday. It took a while to get her pain and vomiting under control. So this admission was due to a migraine headache. She is supposed to followup with a neurologist and take Midrin whenever she begins having auras in her sight. Her immunoglobin level is so low they want to try IVIG again but Dr. Choi is ordering something special. She found out through a pharmacist that she was able to do this.

Wednesday, November 21, 2007 - We received terrible news yesterday. Janice (Dave's sister) has relapsed and will need a bone marrow transplant. What is so very weird about this is that Kelly relapsed at this time; right before Thanksgiving and Jenny's wedding. Jan was waiting to hear from the hospital yesterday what the next step would be. If Dr. Erba does the same thing he did to Kelly, he will admit her today to get chemo started again to get her back in remission. They will be testing the brothers to find a match. Let's hope and pray that one of them will be a match. At least she has 4 chances wherein we only had 1 chance. The siblings are the best chance for a match. Dave's Mom is having knee replacement surgery today. She wanted to cancel it but Jan told her to go ahead. I know she felt bad going through with it but I told her if it's like Kelly, they do the chemo to get her into remission and then have to wait for the bone marrow transplant. Kelly waited 3 months. She already had one knee replaced and she said that's about the length of time it took for the first knee to somewhat heel and get back to normal.

Thursday, November 8, 2007 - Not much to report, thank goodness. Kelly has been trudging along. Getting up when she feels like it but still not being able to be very mobile because of the hip issue. She has been sitting at the sewing machine that Meemaw and Peepaw bought her making a purse for herself and coming up with her line of winter apparel. Can't say much more because it's for Amy when she comes home at Christmas. We are so excited about Amy coming home.

Tuesday, October 23, 2007 - Kelly has slowly but surely been feeling better. She went to clinic today. Dr. Levine said in the meeting they had last week it was decided that they will not go down on the steroids until March 2008. Kelly said to me today that if she saw Dr. Yanik and he asked her if she wanted to go down that he probably would. This is the difference in doctors and what you have to deal with when there is a team of doctors. But in a way I feel it's better to have multiple doctors looking at your case because they may see something that the other doesn't. She has that hacky cough back with green flim so they put her on the Z-PAK again along with another medication that I can't remember at this moment.

Monday, October 15, 2007 - Kelly had ECP last week and a clinic appointment. Dave went with her. He was the one that told Deb how tired Kelly was all last week. Deb said that's not normal and we should give them a call whenever that is going on. Kelly feels like she bugs them. She's to the point that she thinks when they hear her name they say, "Oh no, not her again." She felt pretty good this past week, thank goodness.

Monday, October 1, 2007 - Kelly is feeling much better, with the exception of her hip and back pain. We believe it was vancomycin overload that made her feel so bad. They switched her to Cipro and Linezolid antibiotics and added Cataflam as an antiinflammatory drug. That was the drug that interacted with two other medications she is on. A week ago Sunday, she took a shower and was changing the dressing of her PIC line and the line started easing out. We pushed it back in and put the dressing back on with the intent to inform the doctors the next day at ECP. They told her to go in on Tuesday at 7:30 for an x-ray of the PIC line. The person who saw her said the BMT doctors are always letting the PIC lines that start coming out slide when really they should have them removed. Needless to say, Kelly's PIC line was removed last Tuesday. After ECP she saw the hip doctor who did the surgery. He once again told her the sooner she can have something done to her hip, the better, and urged her to make an appointment with Dr. Goulet. On Friday, Kelly went to clinic again and they told her that the sputum came back positive for a rhinovirus. SO a virus could have contributed to the vancomycin overload to make her feel so bad.

Friday, September 21, 2007 - I am to the point of being angry! As I said before, it takes a lot for me to be angry but when I reach that point...it's the point of no return. I am angry about the nurse Kelly had yesterday afternoon. As a result, we complained and the floor/charge nurse came to see Kelly today to get details. This nurse would not even walk into Kelly's room (on previous admissions, as well as this one) because she had precautions posted on her door that was as a result of her. They "supposedly" put precautions on because of her cough. I kept telling them she has had the cough for months and months. The doctors prescribed antiobiotic after antibiotic but nothing took the cough away. After that they said it was that patients who suffer from chronic GVHD develop a chronic cough. After that they say it was due to acid reflux. So now they have precautions again because of this nurse. But then she says it is because she is VRE positive again. So back to the nurse. Yesterday, Kelly calls me at work (my new job, recall) to rant and rave, I know exactly who she is talking about and that we have complained about her before and have requested that we NOT have her as a nurse again only to find that the very next day we have her as a nurse. Why don't they listen to us? We complain to the nurse who was on the next shift and she is the one who does something so that the floor/charge nurse comes in to clarify things with Kelly today. I am angry that Dave went to the pharmacy today upon Kelly's discharge to find that the antibiotic she has been getting for two days interacts with the antidepressant and pain medication she has been on for months. I am resolved to putting all of this in writing. I am wondering if this is a result of having your daughter treated at a teaching hospital? Don't the people/doctors in charge look over her treatment? Even though she is on a team of doctors, it just doesn't seem to me that she gets the proper treatment. Forgive me for ranting, but I can't help it.

Tuesday, September 18, 2007 - Kelly was discharged on Friday but was re-admitted yesterday. They sent her home on vancomycin every 12 hours that has to infuse over a 3-hour period. On Sunday, she started the infusion and started feeling funny so she stopped it. We then gave her more Bendaryl & some Tylenol (which she said they didn't use in the hospital to pre-med). She also wanted to start a hydration IV. She was feeling so bad. I called the on-call doctor and, of course, the usual, "If she is having chest pain and chills, you need to go to ER because these are not reactions of vancomycin." Well, we really didn't want to do that since Kelly was scheduled to go to clinic the next day. We figured we could medicate her better at home. She also decided not to do the second dose of vancomycin on Sunday. On Monday, Dave said it was really hard to get her out of bed and going for the 10:30 appointment at the Cancer Center. After they did a blood draw, she became very dizzy and lightheaded. Dave said she was leaning her head on his shoulder the whole time they were in the waiting room, which is something she rarely does. He said Kelly told the doctor and Deb how bad she was feeling and she felt she should be re-admitted. So they moved her over to urgent care on the 2nd floor and waited for a room. Dr. Yanik thinks she may have a blood infection and that it could be the PIC line they put into her arm.

Thursday, September 13, 2007 - Well, the night of my last entry at around 10:30, I found Kelly in bed crying in pain. I laid down beside her to start rubbing her head and she was burning hot. I said, "We need to take your temperature." Sure enough, she had a 101 temperature. Needless to say, off to the emergency room we go. When I talked to the on call doctor, I told him that we really didn't want to go to ER and was there any way we could wait until tomorrow. He didn't want to wait due to the fever. By the time we arrived at ER, her temp was 103. They gave her some Tylenol for the fever and started hydration and dilaudid going in. Dave and I were both there and I went home around 5 a.m. When I went back to the hospital at noon, they had already taken an ultrasound of her right hip and found fluid in it. The ortho doctors did a biopsy to get some fluid to see if there was an infection going on. They were not able to get much fluid out at all. It was kind of funny because Dr. Yanik and the fellow transported her down for the procedures so they could get some quick results. Dr. Chamdin (the fellow) said the fluid was not clear so it's possible there is bacteria and the safest thing for them to do was arthroscopic surgery to go in and remove the fluid and clean it out. So, at 10:00 Saturday night Kelly had surgery on her hip. They made two small incisions into her leg. The ortho surgeon came out to talk to me about midnight to same he was pretty sure there was no infection but because of Kelly's immune system, he could be wrong. He said people who have a normal immune system when he put the needle in for the biopsy the fluid would have come gushing out because of the release of pressure but that didn't happen with Kelly. I wanted to know his thoughts on her avascular necrosis issue, hereinafter AVN (that's want medical professionals call it). He told me that AVN is not his speciality but he is partners with Dr. Goulet who Kelly had seen 2 weeks prior. He say Kelly's situation is so difficult due to her being on steroids. It would be difficult for her to have hip surgery since her bones are not very strong but recommended Kelly follow up in a few weeks to see what Dr. Goulet says. We made it back to the room by 2:00 a.m.

Friday, September 7, 2007 - Last week Kelly had ECP on Monday and Tuesday. She was whipped the rest of the week with pain in her back and hip so stayed in bed most of the time, which we don’t really like because it makes her muscles weak. What are we to do though? I think bike riding every day may have contributed to the back pain. She went to the BMT clinic on Friday and they reduced her steroids down to 6 mgs/day. Hoorah! This week she has gone back to the turtle shell back brace. She was wearing several cloth straps around her mid-section but with the latest back pain she decided to switch back to the plastic one for additional support. She’s probably in more pain also from the steroid reduction. She wants to make an appointment with the hip surgeon soon to talk about getting some relief through surgical procedures. After 6.5 years, I am leaving the Psychology Dept. I have been promoted to the Clinic Service Representative at UMACC, which is the University of Michigan Autism & Communication Disorders Center. Catherine Lord is the Director of the center. I used to work with her when I was the Developmental/Clinical Area secretary. I am very excited! I start there on Monday. There are a lot of great people in Psychology and I will miss seeing them. I’m hopeful they will stop by to say hello when they are in the area. Amy is learning a lot in her new teaching job. She has some trouble makers in one class and she’s trying to figure out what will work to get them to cooperate with her. She says she’s learning a lot and is enjoying it. She misses being around people she “really” knows and who know her. Right now, everyone is a new acquaintance. That will change with time.

Wednesday, August 21, 2007 - Kelly was recovering all this past week. Didn’t feel good a lot of the time and was tired. She finally was able to get up and moving around on Sunday and has been trying to do light exercises since then. Today she has an appointment with the orthopedic doctor as a follow up for her hip issues. Luckily, she says it feels better but pointed out that she is taking a higher dose of pain medications right now.

Wednesday, August 15, 2007 - Kelly had her gall bladder removed this past Sunday, 8/12. She was scheduled to have it removed on Friday, 8/10, but she had an attack early in the morning that landed her in the ER yet again. The gastro OR doctor admitted her. They did not want to remove it while it was, as they say, “hot.” Her white blood cell count was also high at 12. So they started her on antibiotics. She had another problem that the gastro OR doctors who admitted her were not addressing her bone marrow transplant issues. They were not giving orders to the nurses for her BMT medications. The BMT team were unable to care for her since they did not admit her. Luckily, Dr. Kitko did stop by to see Kelly daily. It is just amazing that the doctors don’t communicate.

Thursday, August 3, 2007 - It’s official. Kelly’s gall bladder needs to be removed. Dr. Kitko told her yesterday and was trying to have the surgery done right away but the gall bladder doctor said by looking at all the tests run it doesn’t appear to be an emergency. So she is scheduled for surgery next Tuesday. We were hoping it would occur soon so she didn’t have to go home and take the chance that another attack would land her into ER. But the doctor told her to stay on a low fat diet until the surgery. It’s usually an outpatient procedure but because of Kelly’s history, the BMT team may admit and watch her for a few days. I guess the gall bladder doctors have to adjust the steroid medications so another reason that the BMT doctors would want to watch her. We may know more about this today as she is begin discharged.

Thursday, August 2, 2007 - The doctors ended up putting Kelly back in the hospital. Late Sunday night (like around 10:30) she started having chest pains again. Dave drove her to ER. I kind of thought that wasn’t the best thing to do but how could we know for sure she wasn’t having a heart attack. The ER was useless but they had ruled out all of the serious things 10 days prior so they just gave her Dilaudid every once in a while. Well, Kelly became so frustrated that she got up and walked out and headed to the BMT clinic. She must have been in tears when she arrived because when arrived and talked to Christina (the receptionist) she said they all felt so sorry for Kelly for what she went through in ER. I told Christina, Kelly has an extremely high tolerance for pain so when she is in tears, you know something is wrong. She said, “I know. Usually when Kelly comes in here she is so pleasant, never upset like she was today.”

Monday, July 23, 2007 - We reached a few milestones over the weekend. Kelly ended up being admitted to the hospital on Friday. So the milestones…this was the longest she had stayed out of the hospital (7 months), it was the shortest hospital stay (48 hours) and the quickest discharge (3 hours).

Thursday, July 19, 2007 - Well, we had another ambulance trip to the ER Tuesday night around midnight. Dave and I were sleeping when Kelly called Dave and said I need your help NOW. We rushed down to her vomiting and having severe chest pains. She was saying all of the things they tell you to watch for with heart attacks. The most notable being that she felt like someone was sitting on her chest. Our attempts to get her settled down and take her to the hospital didn’t work as she requested us to call 911. The emergency personnel were there within 10 minutes. They gave her nitroglycerin and some aspirin and loaded her into the ambulance. I was in the front seat while they were doing an EKG. After that the driver was in no hurry and did not turn on the lights so I was a relieved that they did the EKG and did not feel she was having a heart attack. The ER staff immediately started assessing the situation also but it was a while before a resident came in and then finally the doctor (that took about 3 hours). As they ruled out a heart attack or heart damage and were suspecting the gall bladder, I decided to go home to get some sleep (around 3:30 a.m.). Around 7:30 a.m. Dave called me to pick them up. Thank goodness she was not admitted to the hospital. They don’t really know what caused the severe pain that radiated down the middle of her chest and below her breast (like a plus sign). They believe it could be a severe attack of acid reflux or that GVHD could be in her esophagus, which would require an endoscopy. She goes to ECP on Friday so we will see what the doctors say then. You’ll recall this has happened once before. Same thing…ambulance called, etc. The diagnosis was severe acid reflux attack. But that time she was admitted. So we are so thankful this time that she wasn't admitted.

Friday, July 13, 2007 - This entry may be long since I am writing about our vacation. Yes, Kelly was able to actually enjoy a vacation for the first time in 5 years. Prior to the vacation on Wednesday, June 27th, she had the Neostar removed from her chest. Yeah! While we were at the hospital, we stopped by the BMT clinic to inform them of the discomfort Kelly has started to feel in her right hip. Instead of waiting for someone to come out to talk to us, we decided to leave her cell phone number and went off to Busch’s to buy the food items we needed for the drive to Alabama the next day. Kelly received a call from the BMT clinic right as we walked in Busch’s door. They wanted her to get an x-ray and be seen by the doctor and asked if we could go back to the hospital. Of course, that’s what we did. Dr. Levine examined her and was not sure if it is her hip or muscle problems. He said that sometimes people on long-term steroids develop avascular necrosis and wanted to get an MRI done. She was told to take her pain medications as needed to make her comfortable until the results come in. Below you will see that she had the MRI done yesterday. While we were at the clinic, a thunderstorm developed, which caused power surges and their computers to temporarily go down. It took a while for us to get through at the clinic so we were late for Kelly’s appointment to see Dr. Mian. When we pulled up at the Kellogg Eye Center, there were a lot of people standing outside. As we walked in, we could see that the power was off and a lady asked why we were there. Since Kelly needed to be seen for a post-op exam, she told us to go to Dr. Mian’s office to see what he wanted her to do. The nurse did an old-fashioned eye test, holding a sign up in the hallway. Then she took us to the operating room where a generator allowed Dr. Mian to take a proper look at her eyes. What a day! We didn’t make it home until about 4:00. So I went to the store, packed and off we went to my Mom and Dad’s house to spend the night.

Tuesday, June 26, 2007 - Kelly had cataract surgery on her right eye on Tuesday, 7/19. It went very well. Now she is trying to get used to wearing glasses to read. It's an adjustment. She returns tomorrow afternoon for the final check of her eye by Dr. Mian. Also tomorrow, she gets the neostar removed from her chest. YEAH! She is very happy about this. She says, "Now I can swim." Then on Thursday, we will make our drive to Alabama and return on July 3rd. Then we will drive up north for the rest of the week so we are very much looking forward to our upcoming vacation days. Unfortunately, Kelly's hip has started bothering her. Jill & Evalina (two young ladies who had bone marrow transplants) have both had hip replacement surgery. So now I'm sure Kelly is wondering if this is the next thing she will need to get done. Poor thing can't get a break. Things are better though then they have been for a while. She has not had a hospital admission for 6 months now. YEAH! We went up north this past weekend and she was able to go out on the pontoon with us. Dave's cousin Burt and his family (along with 2 friends of their kids and Charlie, their Labradoodle) came up also. We had a great time and great weather. Dave had multiple problems with starting engines though. The battery on the pontoon was dead so he had to get the truck battery in order to get the boat motor started. Then he was trying to start the 3-wheeler so the boys could take a ride but ended up not getting that going. Then he almost chopped his toe off chopping up wood for the campfire. Now we have stories to share about our weekend thanks to Dave.

Wednesday, June 14, 2007 - Kelly had clinic on Monday and saw Dr. Yanik. We were expecting them to go down on her steroids again, however, Dr. Levine had made a note in her chart that steroids would not go down until August. So Dr. Yanik paged Dr. Levine and they are now planning to go down in July. Dr. Yanik told Kelly that her persistent cough is due to acid reflux. That was a surprise. She's taken multiple antibiotics for it but it won't come back. She had ECP yesterday and they tried using a vein instead of her Neostar line. It was successful so she can have her port removed now. She doesn't want to have it removed though until after her cataract surgery next Tuesday. Her left eye has done very well and she is anxious to get the other done so she can see clearly in both eyes.

Wednesday, June 7, 2007 - NO MORE IVIG!!! Kelly went yesterday at 4:30 to try an infusion of IVIG again at the urging of Dr. Levine. This is a medication to boost the immune system. We thought she may have had an allergic reaction to the drug in the past but because she received so many things that day (and ended up in the hospital), we were not sure it was the IVIG. Yesterday, confirmed it. The nurse gave her pre-meds of Benadryl and Hydrocortisone and started the IVIG. Less then 10 minutes after starting the infusion, Kelly said, "Call the nurse. I feel like I can't breathe." Her face had turned a deep red and her blood pressure was 90/68. The nurse had the urgent care doctor come in. They stopped the IV and called Dr. Levine. He said to stop it, get her stable and send her home. So that's that, no more IVIG.

Wednesday, May 31, 2007 - Kelly had cataract surgery on her left eye on Tuesday. When she arrived home, she ate and layed down. She started getting pain in her eye that went up to her forehead. She said it felt like a headache. She took some Tylenol and fell asleep. She woke up about a half hour later and had the nausea taste in her mouth so she threw up the food and meds she had taken. That was the end of her vomiting, thank goodness, and her pain. She went back for a checkup yesterday and Dr. Mian said it looked good. She will get the right eye done on June 19th.

Wednesday, May 23, 2007 - Yesterday was Kelly's 27th birthday! Happy Birthday, Kelly! We had a nice surprise yesterday in that Janice called saying Dr. Erba was giving her a free pass to leave the hospital for a few hours. She went in Monday for her final 5-day chemo treatment. So, Kelly picked her up and we all went to Mac's Acadian Restaurant in Saline (our favorite place to eat on birthdays because the birthday person's meal is free with dessert). Then, she hung out with us while we watched American Idol and Dancing with the Stars. I drove her back around 10 o'clock last night. It was a nice time and I'm so glad Jan called.

Thursday, May 17, 2007 - Kelly went to see Dr. Mian yesterday. He is the ophthalmologist who will do her cataract surgery on May 29th. He is going to do the left eye first since it's the worst and then the right on June 19th. He has done cataract surgery on bone marrow patients before. He wanted to do her right eye sooner, however, the schedule was booked. The reason for doing the surgery right away is because she will have trouble with depth perception until the right eye is fixed. He told her she will probably have to wear a contact in her right eye. She will get implants put in that will correct her nearsightedness and astigmatism. This is wonderful! Now she will only have to wear glasses when she reads. Me being a person who is nearsighted feels this is a big deal. We have to wear glasses to watch TV, drive, basically all the time, so it will be so nice for her.

Tuesday, May 8, 2007 - Kelly went to clinic last Monday. Dr. Kitco wants her to try an infusion of IVIG again. They believe she's had two reactions to IVIG so they plan to run it slowly. In looking back through the journal, I'm not so sure she had a reaction to the IVIG or if it was the bowel backup problem that landed her into the hospital. The last time she had it they administered multiple things at infusion and she ended up in the hospital. Hopefully, this won't happen again. She has scheduled May 23rd (I think) for cataract surgery. I hope and pray that this goes well also.

Tuesday, May 1, 2007We actually made it up north this past weekend. Yay!!! It was beautiful weather. In the 70s and sunny. On Sunday, we went to the Grand Traverse Lighthouse. It was extremely windy but nice. After many pictures of the lighthouse, we went to the hiking trails, which were challenging. A lot of hill climbing. They had stairs to an overlook area of the bay. Kelly mentioned that we need walking sticks. There seemed to be a lot of them laying around the trail so Dave found her a couple, which helped with the hills. I want to buy her a couple of nice ones because we plan (and hope) to try to visit lighthouses a lot this spring/summer during our trips up north. Kelly rested a lot on Monday after the big driving and walking day we had on Sunday. Nikka was able to get a lot of walking and running in this weekend also.

Friday, April 20, 2007 - Kelly was very busy every day last week so she crashed during the weekend. I hope she's saved energy for this weekend because we have excellent weather coming our way and we want to go up north. She has not been as busy this week so, hopefully, we can make that happen. She is also coming down off of the steroids, so this is probably making her more tired. She mentioned the other night to me that she feels like she is close to getting out of the TSLO brace. This would be absolutely wonderful! She has been in that thing almost 2 years now. If she continues to go to physical therapy and feels stronger, I'm sure it won't be long. I can't wait to see her without that thing.

Monday, April 10, 2007 - Kelly went to clinic yesterday. She goes once a month now. They told her to drop the steroids down to 8 mgs/day. Yay! Her blood counts were really good. She saw Dr. Cooke in clinic and he told her he is going to Cleveland. After clinic she had ECP and has ECP today as well. She received good news about the bone density test she had a couple weeks ago. Her lumbar and neck areas have improved although her hip seems to have become worse. There is not a day that goes by that she says, "I need to look into that cataract surgery because my eyesight is bad." That's probably going to happen in the near future.

Monday, March 26, 2007 - Kelly was feeling so much better this weekend. She took a drawing class at the Saline Library. Model drawing. She also went out with her friends to celebrate Heather's birthday. We are so glad she is feeling better. She continues to take physical therapy and is actually doing some exercises without her brace. I told her I had a dream about her falling but she didn't get hurt.

Janice is being admitted today for her next 5-day treatment. She continues to tolerate the treatment very well. Unfortunately, her employer has decided to relieve her of her position effective April 1st. Devastating news! Hopefully, she can get state assistance soon.

Wednesday, March 21, 2007 - Kelly has not been feeling well for about a week now. Should have just went with the no news is good news. She continues to have a rattly cough that keeps her awake. The BMT doctors have given the same antibiotic for it 3 weeks in a row so when she called to complain of still having the cough and feeling bad she told them that antibiotic isn't working so please give her something else. Then this past weekend she slept and slept and slept. When she would wake up, she would be sad and crying. She told me she is just tired of the brace and wants to get out of it so bad. We think maybe she is having withdrawals from both the pain medications and steroids still. She had clinic and ECP on Monday so I went with her. Unfortunately, her antidepressant is at the maximum level so Dr. Kitko couldn't do anything to increase the dosage and did not want to change to a different one because it's not her area of expertise so she referred Kelly to the Oncology Psych Clinic but Kelly just doesn't want to go back there. Right now she doesn't want to make anymore changes. She just wants to work through this and hopefully go down on the steroids next week. Dr. Kitko told her to call the clinic next week if she gets to feeling better for them to consider going down on the steroids. She's tough and will get over this soon, I hope.

Tuesday, March 13, 2007 - That saying I've used over and over again applies today. No news is good news. Sorry for the long delay in updating the journal. Kelly continues to do well. She had an appointment last Thursday with her internal medicine doctor (Dr. Williams). He is going to manage her pain medication. She was trying to cut back to only taking methodone but she's been getting the sweats and a little nausea so she's slowly cutting back on the oxycodone. Kelly bought an airbrush and some supplies so this is her latest project.

Jan continues to do well with the chemo treatment. She had some house problems that she had to take care of when she arrived home after the last admission. Something she could do without at this time but these things happen so you have to take care of them. That's it for now.

Monday, February 28, 2007 - Kelly had ECP Monday and Tuesday and a clinic visit on Monday with Dr. Kitco. Her blood counts continue to be good and her blood pressure was 123/92 so I'm sure they will continue to watch that. She's been feeling pretty good. She and Dave went up north this weekend while I was watching Ruth's (my sister) kids while she and Zeljko were vacationing in Cancun. She is supposed to go play Bingo with my Mom today so I'm sure my Mom is very happy. Saturday, March 3rd, is Kelly's 2-year anniversary of the transplant. Happy Birthday, Kelly!

I have been exchanging e-mails with Dr. Williams, Kelly's primary physician, about pain medication management. Since the pain staff have cancelled a couple of Kelly's appointments and are hard to reach, I asked him if he could manage her pain medications. During a recent visit, he told Kelly that she should not have to take pain medication 4-6 times a day for chronic pain. So he's making some headway as he's talked to the pain staff that saw her during the December admission. He plans to also talk to the BMT people before making a change. Kelly mentioned this to Dr. Kitco on Monday so I expect we will hear from him soon.

Janice was admitted on Monday, 2/19, for a 5-day chemo treatment that the nurses told her was going to kick her butt. She has 2 more 5-day treatments to go. I'm sure there will be a maintenance treatment phase also. We told her to ask Dr. Erba for a sheet listing her treatment protocol and for her to also ask for her blood counts every day. She did very well last week because Dr. Erba even let her go home to take care of some things for a day and return back on Thursday at 8:30 pm for her final chemo treatment on Friday. Dr. Erba is awesome! Jan really likes him and we do, too.

Twila is passing out coupons for Max & Erma's in Ann Arbor at State Street & Eisenhower. If you eat there on Tuesday, March 6th, and take a coupon, they will donate 20% of your tab to the Team in Training marathon. Many Max & Erma's throughout Metro Detroit are participating but not all. So if you are going to be in Ann Arbor on Tuesday, you'll need to eat, so go to Max & Erma's. Let me know if you need a coupon.

Monday, February 17, 2007 - Kelly has been up and down in bed with her back all week. After laying down most of Monday, Kelly visited the Art Center on Tuesday to learn how to make a felt bag with old sweaters. She came home to lay down and planned to go back with me for the earring workshop but she decided to stay in bed, which was a good thing. She just wants to be up so bad but must be careful and not overdo things. We had a snowstorm that night so I didn't go to work and Kelly & Dave did not go to the airbrush class. Again, Kelly layed in bed all day with the exception of getting up to go to the bathroom and to eat dinner. On Thursday she had physical therapy. Her back was still hurting but I told her to go because this was the first visit so all it would be is an evaluation to start. She did and then went to the Art Center to show off the bag she was making while laying in bed. It's still not finished but is so cute. She is wanting to line the bag now so the purse has developed while she's been sewing away. Again, I'll promise a picture one of these days.

Kelly had an appointment with Dr. Leavitt on Friday. He is Dr. Kitko's husband a nephrologist, which is the branch of internal medicine that deals with the study of the function and diseases of the kidney. He was also involved with Kelly's high blood pressures during her last admission. You will recall upon her discharge her kidneys were showing signs of failing and her blood pressures were running in the 130s over 90-100s. When Kelly saw the BMT doctors last week, her blood pressure was down. Because of the steroid decrease (they also discontinued the Actigall), they wanted her to watch it to make sure it didn't get too low. Dr. Leavitt told Kelly to decrease the Cozaar so she's had another reduction with her medication. Keep those reductions coming. That's what we like to hear.

Janice continues to do well. She had a clinic visit this past Tuesday and they were very happy with her blood counts. Her platelets were 447! Irene did another bone marrow biopsy and called her on Friday to say she continues to be in remission. Awesome news!!! She goes in on Monday to begin a 5-day chemo treatment. They told her she should be able to go home Friday evening or Saturday morning. Keep it up, Jan! You're doing a great job!

Monday, February 9, 2007 - Yesterday Kelly went for blood draw, a pulmonary function test, see her internal medicine doctor, see BMT doctors in clinic and then ECP. A long day at the hospital that started at 8 a.m. She was leery about getting the pulmonary function test with the brace on but they wanted her to go ahead and do it just to see if there were any significant changes. They said they saw a small difference but nothing that stands out. Dr. Williams (internal medicine doctor) did a chest x-ray because she has had a cough for weeks that just doesn't seem to go away even after two rounds of antibiotics. Her cough does seem to be getting better though. He was also concerned about the amount of methadone that she is on and wanted her to get with the pain management team to be re-evaluated. She has tried to make an appointment with them but they have cancelled her appointment twice now. She begged Dr. Yanik and Deb to go down on the steroids to 12 mgs and they agreed. They also told her to stop taking Actigall. Kelly said that her counts were all normal - Yippee!!! Janice did go home last Friday. She had to get her blood drawn at a facility by her house that would deliver it to U/M. I am happy to report that her blood counts were also good/normal. Another YIPPEE!!! She has to go to clinic on Tuesday to see Dr. Erba.

Monday, February 2, 2007 - Kelly continued to feel pretty good this week and had a lot of energy. She went on a shopping spree with Meemaw on Monday and was on a huge high afterwards. As we emptied the car, we laughed so hard at the amount of things she bought. We haven't laughed so hard in a long time. We laughed so hard that we hurt. It was a good thing. She and Dave signed up for a workshop in Toledo to learn airbrushing. There is no end to this girl's enthusiasm for art.

Monday, January 27, 2007 - Yesterday afternoon Janice called to let me know that she is in remission. Thank You, Lord, for answering everyone's prayers. She will be in the hospital for another week to 10 days. Her neutriphil count has to make it up to .500 in order to go home. This made my week and made the dinner that Kelly, Amy and I had with Twila Tardif that much more enjoyable. Twila is doing a Team-in-Training Triathlon in honor of Kelly and in memory of her mother who died of cancer 10 years ago. Twila met us at Mac's and brought her beautiful 3-year-old daughter Amber Skye (I love her middle name) and her husband Jim. She had met Amy before because of working in the Graduate Office but had never met Kelly so we wanted to get together and talk about the letter she composed to send to her friends and family. She wants Kelly to sign the letter before she sends it out. Amber was dressed in a dinosaur suit and wanted us to call her Petri. She also spoke a few words of Chinese to us. She's adorable. And that's what Twila is making her run about, Moms & Daughters, which is so touching to me. Twila came up with the fundraising idea to do a Superbowl football pool. She has only 25 squares to go. If you are interested in buying a square for $10, send me an e-mail at webdzins@yahoo.com. If Twila sells all of the squares, she will raise $700 towards her Team-in-Training goal of raising $5,000. Her website is at: http://www.active.com/donate/tntmi/tntmiTTardif. Dave thought it was such a good idea that he is doing one at his work. He will raise $500 to go to the Leukemia & Lymphoma Society. The triathalon takes place in May in Panama City, Florida. She has to swim 1.2 miles, bike something like 58 miles and then run 13 miles. Yikes! That's a lot for petite Twila. But she is a strong, determined woman that will make it to the end. Kelly has been taking it easy the first half of the day this week and then getting up and moving around in the afternoon, evening. I think her back still hurts and she has to force herself to get up but she needs to get up an move in order to get stronger. She and Dave are supposed to go to see George Carlin tonight with a couple of her friends, Kevin and Pete. Other then the back she has been feeling good. At least we've not had the nausea come back. Thank goodness!

Monday, January 22, 2007 - We believe that Kelly over-exercised one day last week by walking on the treadmill, doing exercises with a large ball and then doing Gentle Yoga that she hurt her back or either had sore muscles. Her back hurt so much that she layed on her back beginning Wednesday through Saturday. She was able to get up yesterday and do a few things. She went to see the spine doctor to get her MRI results on Friday. As she was walking down the hall at the Taubman Center, she tripped. Thank goodness she caught herself before she fell on her rear. Dave went to get a wheelchair, which she stayed in the rest of the visit. Dr. Graziano said the MRI showed her compression fractures as being old and he could do nothing about them. He asked her where her pain was and she pointed to her lower back. He said the only thing further he could do is do a discography. Here is a link with Discography FAQshttp://reddinganesthesia.com/discogram.htm. If the doctor did the discography to find her discs are damaged, he would do fusion surgery on the back and put a rod with pins in the spine. Kelly told him she wanted to think about it, research the procedure and will let him know. At this point, it isn't something we want to do. The other thing Dr. Graziano told her to do is get her back stronger with exercise. He gave her another referral to Med Rehab, which she will look in to starting next week. He also gave her a form so she can get a handicap parking sticker. Her back was hurting so much today that she decided not to go to the watercolor class at 212 Art Center.

Janice continues to tolerate the chemo well. Mostly, she stays tired. She finished the induction chemo treatment on Friday. Dr. Erba plans to do a bone marrow biopsy on Friday. The results of that test will determine the next step in her treatment plan. To go home, her neutriphil count need to get up to .500.

Tuesday, January 16, 2007 - Kelly continues to feel pretty good. She said the other day that she hasn't been feeling like death every time she wakes up lately. Hooray! She gets the results of the MRI of her spine this Friday when she sees the Orthopedic doctor again. Janice started the chemo treatment on Friday night. She's been feeling pretty good so far. She complains of being tired. I believe her appetite has changed a little also. She was moved to a private room last Friday. It is one that Kelly was in when she relapsed. Very small but private.

Tuesday, January 9, 2007 - We received devastating news last night. Janice (Dave's sister) has leukemia. She has not been feeling well for a long time. She was not feeling well at the Christmas get together and ended up calling Audrey (Dave's MOM) to ask her to take her to the emergency room. She went to Wyandotte Hospital and they found she had a bad urinary tract infection but also wanted to perform a bone marrow biopsy to check for leukemia. This was on Friday, 1/5, and they had performed so many tests on her including an MRI that did not go so well so Janice told them she wanted to wait until the next week to do the biopsy. We were all hopeful that the urinary tract infection was the cause of her discomfort because they discharged her on Sunday and told her to return this past week for the bone marrow biopsy. She received the call from the doctor last night that the biopsy confirmed she had leukemia. Janice was not sure of the name but from the sound of it, I believe, she has AML (Acute Myelogenous Leukemia). That doctor wanted to admit her to Oakwood Hospital today for treatment that would probably last one month. My sister-in-law Linda (Mike's wife, Dave's brother) called me saying that Audrey wanted to talk to me about what to do, where to go, etc. After many phone calls passed back and forth, we felt she should go to Univ. of Michigan's emergency room to be admitted and I would contact Dr. Erba by e-mail to give him a heads up and to see if he would care for Janice. Dr. Erba, recall, took care of Kelly when she was first diagnosed and then got her back into remission when she relapsed. He is a very caring and knowledgable hematologist and we felt getting Janice in remission was the first step and then Dr. Erba could advise treatment plans from there. So Janice is on 8B at University Hospital, a place we know very well but haven't been to in a while since we go to Motts Childrens Hospital now. We will be there this afternoon. Dr. Erba e-mailed me this morning to say he will be glad to care for Janice. Get the prays going for Janice also. Thanks.

Sunday, January 7, 2007 - Happy New Year! And indeed, it has been a happy new year for Kelly, I am so happy to report. She was feeling well enough to get together with a few of her friends at Kevin's house on New Year's Eve. Molly, her friend that did the Team in Training last year, spent time with her while here from California. They even drove to Columbus for 2 days this past week to visit their friend Heather. Kelly had a clinic visit on Friday. Her counts were GREAT! Almost everything was normal! She received Retuxin and Pamidrinate (to strengthen her bones) that day also. Deb told her to do a fluid infusion again after the Retuxin since it worked so well last week. Deb and Dr. Yanik were so pleased with her blood counts, as are we. Dr. Yanik told Kelly that he expects her to be so much better by spring. We are glad to hear that and hope it happens. Keeping our fingers crossed.

Last night, Kelly, her friend Jackie, my sister Ruth and I saw The Phantom of the Opera in Toledo. It was the first time that Kelly and I have seen it. It was WONDERFUL! I want to see it again. We went to dinner prior to the show. It was a very nice evening.

Thursday, December 28, 2006 - Kelly went to clinic today and received her next dose of Retuxin. Her blood counts looked good today with the exception of her red blood cells, hematocrit and hemoglobin levels being low. Her magnesium is holding steady so she still does not have to take it. This is good because it can upset the stomach. They are still not happy with her blood pressure being so high. Today is was 144/107 and Deb came in to check it again after she had time to sit down and it was the same. Thus, Deb is going to attempt to get an appointment with the blood pressure doctor soon. Dr. Choi wants Kelly to give herself fluids tonight to try to flush out some of the Retuxin since it can cause kidney problems.

Sunday, December 24, 2006 - Merry Christmas Eve to everyone. Today we celebrate Christmas with my family at Danette's house. Tomorrow we will visit with the Hatfields. Kelly has been feeling pretty good the past couple of days and getting into the Christmas spirit. She was able to do some shopping Friday and Saturday evenings and she immediately started wrapping gifts when we arrived home.

On Friday, she had an appointment with an orthopedic surgeon. This appointment occurred as a result of Dr. Yanik asking Kelly during her last hospital admission, "If I could fix one thing for you, what would it be?" She answered, "My back." So the physician's assistant spent a good deal of time with us asking about Kelly's whole back ordeal. She then left to meet with the doctor to discuss Kelly's case and said it would take about 15 minutes. Thinking I had a little time, I ran some Christmas goodies up to the nurses in Motts, 7th floor. When I came back, the PA was in the room, I missed the doctor. Kelly said they came in right after I left. It was no big deal anyway. The usual happened. They need an MRI to see if her compression fractures are chronic or new. After they see the MRI results, we will have an appointment to discuss what they may be able to do to help Kelly with her back. We waited 2 hours to be told to get an MRI. I had to go to work because they were having a small Christmas lunch so Dave had to meet us at the hospital around 12:30. Our first stop at 8:30 was blood draw, so they had to go back to the BMT area to get the results. We stopped by the pharmacy to give them some Christma goodies and pick up presciprtions. They told us they were waiting on authorization for Protonix and Neupagin. WHAT?!? Neupagin? Are you sure you have the right patient? They did. They doctors had faxed the order in the morning. Needless to say, we needed to consult with the doctors about this. So Kelly saw Deb first and then had what she described as a clinic appointment in the waiting room with Dr. Choi. Her kidney function levels were almost back to normal so she told her to stop infusing fluids. (Thank Goodness!) The high end of normal is 1.0. Kelly's level on Friday was 1.1. Her white count is low so that's why they prescribed the Neupagin. They said it could be from a number of things, one of which is infection so back she went to blood draw to do cultures. She has to go back for blood draw on Tuesday and we'll have the results.

So we are very thankful that Kelly has been off the fluids since Friday and that the swelling in her feet and legs has gone down. Her left ankle is still slightly swollen but it's nothing like it was before. THis morning her back was throbbing when she woke up so she took some pain meds and layed back down. The problem with her pain meds now is that she needs to take them around the clock every 3-4 hours. So it's very easy for her to miss a dose during the night. The Neupagin could also be the cause of some of her discomfort because it makes her very achy. I believe she will be able to enjoy the Christmas visiting we have planned so we are very thankful that she is feeling up to going and that we are not in the hospital this holidy season. Merry Christmas!

Tuesday, December 21, 2006 - Kelly continues to be hooked up to IV fluids. Her ankles and legs become very swollen if she gets out of bed. We have informed the doctors but they want her to continue to infuse fluids. Her blood draw yesterday showed that her kidney function numbers are improving but still need to come down even more. She has an appointment with a spine doctor tomorrow morning and the BMT doctors want to see her after that appointment to check the swelling problem. She feels miserable being this swollen. I just hope and pray that her kidneys return to normal.

Tuesday, December 19, 2006 - It is really Monday night so I am very amazed that I am actually making two journal entries in one day.  Just thought I would make it Tuesday so that everyone would know that I updated the journal again.  I did Monday's entry before I went to work this morning.  Kelly went to blood draw at 8:00 am and had a 9:00 appointment at clinic.  That didn't happen though.  She didn't get finished until about 12:45 pm.  I had to pick her up since Dave had an appointment.  Her counts were about the same so she has to continue giving herself around the clock infusions of fluid to try to flush out her kidneys. At least they didn't increase.  She has to go back for blood draw on Wednesday so we will see how the counts are then.  They cancelled her next infusion of Rituximab, which was supposed to be on Thursday.  They re-scheduled it for next week.  She still feels constrained but at least she is at home.  Being the holiday season, she was ready to get out and shop but then reality hit when I told her she had to be continuously hooked up to the IV pole.  I think we should decorate her IV pole for Christmas.  I'm going to mention it to see if she will do it.  Hey, you gotta have fun with this stuff when you see the opportunity.  She actually added a ribbon to our tree that Amy set up this year for my birthday.  We bought the ribbon and bow one day when we went to Crafts 2000.  It looks very nice, especially with the lights on.  

Monday, December 18, 2006 - Kelly made it home on Friday but not without drama.  My sister, Danette, happened to be visiting when they said Kelly could go home so Danette dropped her off at the house around 5:30.  Thanks much to Danette.  They sent her home with the plan to infuse Vancomycin every 12 hours.  We ordered nachos and pizza from Mancinos around 8.  About 10:30, Kelly threw up.  Thank goodness she only threw up that one time.  Dave came home around 12:30 a.m. from work and she hooked up the Vancomycin.  She had to go to the hospital 12 hours after infusing the Vanco for a blood draw.  I woke up Saturday morning vomiting and did so all day long.  We think there was something wrong with the nachos because Dave ate the pizza but did not eat the nachos.  Dave took her to blood draw at 12:00 and they called back to say that her Vanco count was high.  They were wondering if it was a false reading so asked her to go back to the hospital to do a peripheral blood draw.  Not too long after they returned, Kelly was getting multiple calls from nurses and Dr. Choi.  Both the Vanco and Creatine/Urea counts were high so Kelly's kidneys were basically showing signs of shutting down so they wanted her to stop the Vanco and begin drinking lots of fluids.  When they called she was infusing the second grenade of Vanco so she stopped that infusion.  She had to go to 7 Mott yesterday at 10:00 a.m. for another blood draw and while we were waiting for the results they gave her a bolice of fluid.  All of the counts slightly elevated so they stopped the Vanco all together and decided to let her go home on round-the-clock fluids to try to flush out her kidneys.  Dr. Connelly said that if it were any other patient they would admit them but since Kelly is skilled at infusing at home, they would order a HomeMed delivery so she could infuse the liquids at home.  Thank goodness!  So she has been on constant fluid infusion since 4:00 yesterday and has to go to clinic this morning at 9:00.  Let's hope her counts go down this morning or they just may admit her again.  Never an easy moment.  

Friday, December 12, 2006 - Saturday was the first day that Kelly felt half way decent. That was good because she had visitors-Burt & Kathy Pierce from Chicago and their friend Jim. Amy also stopped by to visit and stay with Kelly while Dave & I went out to eat. We actually both slept at home that night. One of us has been spending the night with Kelly because she's been feeling so bad. On Sunday, I was getting together with my Mom, sisters and brother for our annual shopping trip to celebrate my birthday. About 11:30, before going into the mall, I called Kelly to see how she was doing. She answered and said, "I gotta call you back. I'm not feeling too good right now." So I called Dave and he hurried up to the hospital to see what was going on. They realized by the time I arrived with dinner at 6:30 that Zelnorm was the cause of this nausea, which caused her blood pressure to go sky high (165/103) and cause a headache. When I walked in, her face was blood red. It was a total surprise seeing her that red. Dave looked up the side effects of Zelnorm and they were all the things that Kelly was experiencing.

Later that evening, I was rubbing her back and head and noticed an odor like bleach. I mentioned it to her and she said she thought the odor smelled like a tanning booth. We asked the nurse to check out the odor and Kelly decided to change her shirt because she felt it was contributing to her headache. To take off her shirt, the nurse has to unhook her IVs. When Kelly changes her shirt, she does it laying down and rolls from side-to-side. When she rolled on her right side, blood gushed out on the sheets. This really scared us - what was going on! I tried to settle Kelly down while the nurse was checking out her lumins. She started flushing the lines and noticed leakage. There were 2 slits in the tubing. Yep! Kelly needed a new Neostar. She had to get an IV put in her hand in order to keep getting her meds and pain medication. Back to staying overnight. It was extremely hard for her to put her brace on to go to the bathroom with an IV sticking out of her right hand. The pediatric surgeon visited us that evening and said they would fit her in on Monday to either repair the current Neostar or place a new one. We questioned if they should use the current one since they identified one lumin with bacteria (Bright light going off - bacteria probably entered through the slits). He said they would figure it out once he talked to the BMT doctors.

On Monday, I stayed with Kelly until the doctors did their rounds. They put in a request for the Neostar and said it would happen around 4 or after so I went to work. When I left, Kelly was feeling good and stayed up to carve the 2nd Christmas card stamp. I can't wait to send my Christmas cards this year but with the way things are going, they will be sent late. Maybe even after Christmas but I just have to send them because they are beautiful. I'll put a picture of them up sometime also when things get back to normal. OK, got off track. She called me at work to say they were not going to place the Neostar but it would happen around noon on Tuesday. When I arrived, we went ahead and did the shower routine to prepare for not being able to take a shower for a few days. The nurse unhooked her IV and we wrapped her hand very carefully in plastic. When we returned, the nurse could not hook up her IV again because of a blood clot that formed in that short amount of time. She began a flush and we heard a loud pop and Kelly yelled. Again, another IV had to be placed. This time they put one in her left arm. This poor girl just cannot get a break.

Friday, December 8, 2006 - So many things occur each day Kelly is in the hospital that I hope I can remember it all.  Yesterday, Dr. Choi informed us that all of Kelly's tests have come back negative, which is good.  Thursday morning, Kelly was not feeling well at all with nausea, headaches and stomach cramping and she was extremely depressed.  These symptoms have been continuous since she was admitted.  And Dr. Choi has noticed how in the morning Kelly has a hard time but later in the evening looks and says she feels better.  I explained to Dr. Choi that this is the way it is almost every single day.  Kelly says she feels like death when she wakes up in the morning.  She has to take a lot of pills, which when at home she was trying to eat before taking them.  At the hospital, she is NPO meaning she cannot eat or drink anything except sips of water to take her medicines.  This doesn't make sense to me.  Thank goodness, Dr. Choi has now started administering as many medications as possible by IV.  She stopped the cyclosporine all together so started giving her Rituximab last night as a replacement.  It's a type of chemotherapy with multiple side effects so I decided to spend the night.  The intent of the medication is to prevent GVHD.  Prior to getting the Rituximab infusion, Kelly's blood pressure was very high but once the infusion began, her blood pressure started going down, which (if you can believe it) is a side effect of the drug.  Never thought it would be a good side effect.  She has discontinued (dc'd) the calcium and magnesium.  Kelly is now being fed nutrition intravenously also.  The calcium she gets through nutrition feeding and the magnesium she gets as an infusion.  Earlier today, Kelly's blood pressure went up to 163/115 and Kelly's face became beet red.  She also had a temperature of 100.5.  One doctor that came to see Kelly about her blood pressure told the BMT doctors not to use isradipine anymore because that is bad for Kelly's kidneys.  So they are trying to control her blood pressure with another pill that I don't remember right now.  You would not believe all of the medication changes Dr. Choi has made but we feel she is at least trying to get Kelly more comfortable and off some medications by the time she returns home.  She put her on methadone today for pain relief.  Around 7 pm tonight Dr. Choi came in to report that the blood culture test from yesterday came back positive for bacteria in one of her Neostar lumens.  Now she is on Vancomycin, which gave her redman syndrome before so they have to be careful to infuse it slowly.  They are taking blood culture from her peripherally to see if there is bacteria in her bloodstream.  They will have to take the Neostar out if the lumen continues to test positive for bacteria in the next 2-3 days.  Dr. Choi wants Kelly to keep of journal of everything she puts in her mouth and the symptoms she experiences during the day so she can try to determine what triggers the nausea and headaches.  She had a woman visit her today that massaged her feet, gave her a magic wand and set her up with a CD player with soothing music.  During this stay she was visited by some Michigan athletes and cheerleaders that signed a cap and gave it to her.  They visit the kids in Mott occasionally, which is very nice.  She was also given a pair of cushy socks and a Spartans cap (yikes! but it was a nice Nike cap) by elves that were visiting the kids rooms.  This evening Kelly was feeling better and was actually laying in bed knitting.  Looks like we have a number of days to go before she gets out of there.  We just want her to feel better and be on fewer medications when she returns home.

Wednesday, December 6, 2006 - Kelly remains in the hospital, still very uncomfortable with nausea and headaches.  On Monday, I took off work to be with her during several procedures that were ordered.  We were downstairs from noon until 6:30.  She had a ultrasound of her kidneys, liver, and gallbladder.  She was then taken to MPU for an endoscopy and colonoscopy.  The upper intestine was clear, however, the lower had some abnormal tissue that was biopsied.  Yesterday, Dr. Choi said it came back as GVHD but, unfortunately, they have no way of telling whether it was old (from when she had it in June 2005) or if it is new.  As a result, they are giving Kelly a shock treatment of steroids raising them to 70 mgs for 3 days and then taking her back down.  I don't know yet if it is 6 mgs or if it will be higher when they take her back down.  I questioned if it is old then why up the steroids.  She said since she is so miserable with the nausea, they just want to get her feeling better.  Another thing they did was stop the cyclosporine (a GVHD drug) all together.  The neurologists noted from her MRI that the back portion of her brain showed a high amount of cyclosporine or nausea.  I'm probably not explaining this correctly.  But what it gets down to is that portion of her brain raised a flag.  It's either because her cyclosporine level is too high or because of all the vomiting.  Thus, the dc of cyclosporine.  The term "dc" is used all the time by the nurses and means discontinued.  She continues to have very high blood pressures.  This morning when I left it was 145/119.  They were going to give her isradipine.  Today, they are doing another test on her gallbladder to see if it is the cause of nausea.  The endocrinologists visited yesterday and they are going to try to come up with ways to strengthen her bones.  Kelly is not feeling very good right now at all.  Let's hope the steroids help her.

Twila Tardif, a professor in the Psychology Department where I work, has signed up for a Team in Training Triathlon.  She has really made a huge commitment both physically and monetarily.  She is doing this in honor and memory of her mother and to honor Kelly for her long battle with leukemia.  Please visit her web page at http://www.active.com/donate/tntmi/tntmiTTardif.  If you are able to donate to this worthy cause, please do so.  Any amount will help and be greatly appreciated.  My family plans to begin selling bead work again to help raise money.  

Thank you to everyone for your continued support, prays and well wishes for our family.  

Friday, December 1, 2006 - I'm thinking I jinxed myself with the last journal entry.  I should have just left it as "no news is good news" because Kelly was admitted to the hospital the next day.  Last weekend, she woke up with a headache every morning but was able to get rid of it by the afternoon.  She also had a sore throat on Sunday and Monday so we were thinking the headache was sinus related.  On Tuesday, the same thing, she woke up with a headache and sore throat and even called the clinic so she could be seen before ECP on Wednesday.  About noon, Dave called me at work to say that she vomited but was able to stop.  This was to put me on alert because we know how things go when she begins to vomit.  She had a headache all day long though.  She was able to eat dinner and we were in bed when, around 11:15, she shouted, "Mom, I need a bucket."  After she vomited, she tried her last Zofran but that didn't last long.  She was vomiting every 10 minutes.  Since Dave was on his way home from work, I called him to see if he would take her to ER with the hope that they would be home by morning and he could sleep before going to work in the afternoon but that didn't happen.  She was admitted.  I took off work on Wednesday to be with her because it's the same old story...the medical team needing to get her vomiting and pain under control with loads of IV medications that knock her out for the most part so someone has to be around to make sure things are proceeding as they should.  Since she still wasn't totally comfortable, I spent the night but went to work Thursday morning because Dave could be there.  Dr. Yanik was the attending.  I did my best  to express to him our frustration with the way Kelly has to live her life every day.  Taking a huge amount of pills (let me tell you, people, you would not believe the amount of pills she takes every day), wearing a torso brace, saying she feels like death every morning when she wakes up, ending up in the hospital almost every month because of vomiting...you get the idea.  We are fed up and want them to do something.  This kid has taken enough.  We need to improve her quality of life somehow.  It's ridiculous that she ends up having to go to the hospital because of vomiting.  It's no wonder with all of the pills she takes.  Dave also expressed his feelings to Dr. Yanik and during this session he asked Kelly, "If I could fix something for you, Kelly, what would it be?"  She said, "My back."  After these conversations, Dr. Yanik ordered Kelly to be seend by a neurologist, gastro specialists, and he says an orthopedic doctor that he has personally asked to see Kelly.  The neurologists ordered an MRI (by the way, a CT scan of Kelly head the first day was thankfully normal) but this being Friday, we still haven't seen the doctors.  They had stopped by when transport was taking Kelly for the MRI so they are supposed to come back.  The gastro doctor also stopped by as Kelly was being taken to MRi but I talked with him and he was supposed to come back but hasn't.  We still have to see the spine doctor.  So, all of these doctors were coming in all at once so Dr. Yanik is trying to get to the bottom of this, however, this has happened before where we see multiple doctors and have multiple tests run but everything comes back normal so they send her home.  We feel it comes back to all of the medications.  I even told one of the nurses that I am questioning myself as a parent.  Should I be taking her somewhere else?  To think of seeking a second opinion about Kelly's condition is mind boggling.  Everything she has been through and all of her records and test results.  It's so hard.  So today, Kelly had severe stomach cramping - enough for them to order an x-ray.  They were concerned at how fast it came on.  We think the stomach cramping and loose stool occurred because they gave her something new to try to get her bowels moving.  They also are giving her a new nausea medicine, Reglan, so maybe that caused her stomach distress.  Do you get our drift...all of these medicines.  To add to it, because of her stomach cramps, they made her NPO (no intake of liquid or food) but they still want her to take all of her medications.  Tell me what is wrong with this picture.  We did get the nurse to call to at least let her drink clear liquids.  Dave was with her when all of the stomach cramping occurred.  By the time I arrived, she was comfortable.  She is still tired due to all of the medications and I am tired also so came home to update the journal and head to get some sleep.  So we shall see what develops.  I'm sure there will be nothing over the weekend.  Most likely, she won't be released until early next week.  I'll keep you posted. 

Monday, November 27, 2006 - I hope everyone had a nice Thanksgiving.  WOW!!  It's been a while since I last updated the journal.  It's that same old saying, which I probably have said somewhere before in this journal, "No news is good news."  Not that it has been all good but it's been tolerable.  Whenever there is no admission to the hospital, that's a good thing.

Dave ended up not going up north to hunt so he was home on Amy's birthday.  Kelly wasn't feeling that well so she was not able to go to Mac's with us.  Tom, Amy's boyfriend, joined us.  He actually ordered fish.  This was an event because he is vegetarian.  I think Amy is coaxing him to try certain things.  Amy went to Tom's parent's house for Thanksgiving.  

We went to my Mom & Dad's house, as usual.  I always go over early to "learn how to make the dressing" (it's a joke with my Mom & Dad).  I go over around 10 a.m. and help finish the meal.  Kelly joined me this time.  Dave stopped by around 4 when the meal was finished and we ate and ate and ate.  You know how it is.  After we finished cleaning up everything, we headed home to pack for up north - yes, up north, finally!  We just had to go up and take care of the pontoon.  Dennis (Dave's brother) dropped by the house on Thursday to say that he was up north hunting and saw that the cover on the pontoon had collapsed.  I guess it snowed about a foot at one point.  He was absolutely right, the cover collapsed and tore.  Dave trashed it and prepped it for shrink-wrapping by Pioneer.  Thank goodness that's over with.  It was such beautiful weather this Thanksgiving.  Believe it was our Indian Summer.  

I was on vacation this past week.  We planned to go up north the weekend before, however, Kelly wasn't feeling very well so we stayed home.  Kelly is making a felted purse so, guess what, I am, too!  This is amazing for me to be doing all these crafty things.  I have never been a crafty person but all this weekend, I was knitting and knitting and knitting.  I wanted to catch up to Kelly so we could learn how to make the handle of the purse together.  They look really cool.  It's a special type of yarn that you knit with and then you can add "fun" yarns (mine are feathery & multicolored).  When finished knitting, you put it in a pillowcase and put it in the dryer and it shrinks.  We can't wait to see our finished products.  Kelly is hoping to get with Margie at the Art Center soon to learn how to make the handle.  Kelly is working on multiple things - a colored pencil drawing of vegetables, a flower watercolor painting, the purse, she goes this Friday to learn to knit a scarf, I think that's it.  A lot of irons in the fire.  But art is therapy so this is good.

Today, she has a sore throat and so does Dave.  I hope she's not getting sick.  She actually got a flu shot a week or so ago.  She goes to ECP on Weds & Thurs and to clinic on Thurs.  I think she is ready for them to take her down on the steroids to 6 mgs.  I agree.  Hope they agree.  She has physical therapy this week also.  So she has another busy week.  Dave hasn't been feeling well and actually went to the doctor last week.  He ran a bunch of tests and x-rays.  Hopefully, the doctor will get him feeling better.  Kelly thinks he might have a slipped disc.  Hopefully, we'll know the problem soon.  It amazes me how long they take getting test results when I'm so used to getting results for Kelly within hours.  I just have to be patient.  

Friday, November 10, 2006 - Kelly was scheduled for IVIG on Tuesday.  She went in at 2:30 and her blood pressure was so high that they called Deb to come by to see her bedside in the infusion room.  She took izradipine to see if her blood pressure would go down.  I believe Deb was going to cancel the infusion but Kelly wanted to see if the medicine would help and it did enough for them to continue with the infusion.  We didn't leave the hospital until 9.  Thank goodness she did not have a severe reaction this time.  We have been walking in the neighborhood the past two evenings around 8-9.  The moon last night was beautiful - a Kodak moment.  Unfortunately, we did not have the camera with us.  Kelly is making me more aware of picturesque moments. Have you ever thought about looking up when you walk?  Lots of picturesque moments.  Just take a look sometime.  I am a little concerned about her right armpit being swollen.  I'm wondering if it is the Neostar that the doctors have been wondering about for the past month or so.  She has been pretty weepy this week.  I think it is an effect of going down on the steroids.  In addition to going to the Art Center this week, Kelly attended an art session at the hospital.  They made their own Christmas cards.  Kelly's is awesome!  Be looking for homemade Christmas cards this year (we hope).  They are so cute.  I still have to get the pumpkin carving up on the website so maybe we can do one of the Christmas card also.  

Pictures of the Week - More Veggie Art!!! - As you will see, Danette, Kelly, Trevor and Mackenzie really went to town on the veggie art.  It's so funny because the day before the event, I called Danette to tell her about it with the thought that we would go downtown to see it.  Boy, was I surprised when they actually made things to enter into the contest.  Danette missed Bunco with all of us ladies to do veggie art with Kelly and her kids.  I am so glad she did.  I think you'll agree.

Happy Birthday to Amy next Tuesday, November 14th!!!  She will be 24 years old. I can't believe it!  We will be getting together on Sunday at Danette's house to celebrate four birthday's - Dad, Trevor, Austin & Amy.  Lots of birthdays in October and we are just now able to get together to celebrate.  Amy wants to go to Mac's in Saline for her birthday dinner so that will be nice.  Unfortunately, it is hunting season so her Dad will be up north with the boys.  We are used to it.  Amy was born the day before the open of hunting season.  

We are hoping that we can go up north the weekends before and after Thanksgiving.  We shall see.  As everyone knows, we take one day at a time.  

Monday, November 6, 2006 - Kelly felt better this past week.  She was able to get to the Art Center and also go out to dinner with Jackie, which she really enjoyed.  Sunday she had a headache and finally started feeling better around 7 p.m.  She had ECP last Weds & Thurs.  Her counts are almost all normal.  She had a clinic visit on Thursday.  They did NOT reduce her steroids this time and they felt her Neostar site looked odd so they scheduled her to have an ultrasound on Friday afternoon.  The technician that performed the test said she didn't see anything but we shall see.  Since we have not heard anything, I'm assuming everything is okay in her chest.  Tomorrow she goes to physical therapy and for the dreaded IVIG.  The last time she received  this infusion she ended up in the hospital.  That was when they found she had a staph infection after releasing her.  I hope and pray things go well tomorrow.  It is the only thing she is getting tomorrow so we are hoping it will go smoothly.  Thank goodness Dave was there last Thursday because they probably would have scheduled the IVIG with something else but he told the doctor that we feel they do too much in one day.  The doctors probably do that because most people come from afar and want to get the hospital day over with but since we live so close, we would rather have procedures split up.  Today she went to the Art Center for watercolors and pastels.  She's also knitting up a storm, which will eventually be a bag/purse.  

Sorry, no pictures this week.  Hopefully, next week.  Thanks for checking in.

Sunday, October 29, 2006 - Kelly has been down in bed all week because of her back.  She had to miss two physical therapy appointments.  She did start moving around more late Friday and on Saturday.  On Friday, she actually got up and carved the pumpkin that the ECP nurses gave her to do for their contest.  She carved a spider with a web and inside she put web material and small spiders.  She had small spider hanging outside attached to the web inside also.  It was awesome!  She is so talented.  We took a picture that is on her camera so I will not be posting it today.  She has a busy week next week.  At the Art Center watercolor and pencil drawing, 2 physical therapy appointments and ECP on Weds & Thurs and clinic on Thurs.  

Kelly's back problems are so frustrating.  I wish they could do something to help her.  Once again, I thought about going to another doctor but remembered that we did that already and the Beaumont doctor (supposedly some of the best in the nation) felt her diagnosis by Dr. Lee was correct.  So, it's just rest and increase of pain meds that help.  Of course, there's always the issue of getting her muscles strengthened.  Now that she's on board for physical therapy, hopefully, her muscle strength will improve.  She works very hard at strengthening her muscles when she is feeling good but then she has issues that keep her on her back for days and a lot of it is lost.  Kelly is truly amazing though.  She does get down often but then she will pick herself back up and do what she needs to do.  

Pictures of the Week - Finally!  Patrick & Wendy's Wedding.  It has not been easy.  For some reason the server is timing out.  I keep on getting asked for the password.  I can only do one picture at a time.  I'm just documenting this so you know I am still having problems.  Maybe I should start a CarePages website???  I'm not at that point yet, however, if this keeps up, I may just leave this one as is and start the CarePage site.  Can you hear my frustration.  I believe Kelly has more pictures from the wedding but we will save those for another time.  Enjoy!

Sunday, October 22, 2006 - Apologies for the long delay in posting to the journal.  In fact, the Oct. 16th posting is new today also.  It was on that date that I discovered our website had reached it's maximum size so I could not upload anything on that day.  So, I have deleted a number of pictures and files so I have room to make updates.  I'm still trying to organize and shrink images.  I plan to post some pictures later when I have the images under control.

Kelly has hurt her back again.  She was sitting on the edge of the bed without her brace on, which she has been doing a lot lately.  While changing her shirt, her back popped and she's been taking extra pain medication since.  Darn!  Dave and I were planning to go up north this weekend but couldn't because of her back problem.  Just didn't want to leave her and I don't think she wanted us to leave because she was hurting so bad.  She went to have her TLSO adjusted at the hospital.  She had to go back twice to get it to where it was comfortable.  Dr. Yanik decreased her steroids down to 8 mg at clinic last Thursday.  She also received the breathing treatment, ECP and pentamodine to strengthen her bones last week.  She returned to physical therapy this past Friday.  She's taking a watercolor class at the art center.  

Monday, October 16, 2006 – Kelly has been feeling pretty good lately.  She has some days where she just has to rest all day.  She is becoming more active in the 212 Art Center in Saline.  She’s currently making a mobile, a watercolor of flowers in our perennial garden and today Margie was going to teach her how to knit.  I am so happy she is getting involved there.  She really likes it.

She is finished taking her antibiotic.  Deb’s goal is to get Kelly’s blood pressure down so she changed her to another medication.  She is also having her start taking Nexium rather then Protonix.  Unfortunately, we have all the prescription coverage issues and she hasn’t been able to get it filled yet.  She has appointments every day this week.  This morning she went to the ophthalmologist.  Her eyes have not changed much since the last visit so cataract surgery is not needed yet.

Kelly was able to go to Patrick and Wendy’s wedding on October 7^th.  It was a very nice wedding and good to see family members that we don’t get to see that often.

We went up north this weekend also.  First time since July that Kelly, Dave and I drove up there.  We woke up to about 2 inches of snow on the front porch Saturday morning.  The Tigers were playing on Saturday and since we get terrible reception and no channels at our place, we went to Silver Dollar Bar to have dinner and watch the game along with about 100 other people.  It was loads of fun.  We were even doing the wave in the bar.  It’s great the Tigers won and will be in the World Series, something they haven’t done in 19 years.  Danette and Bob took Mom and Dad to the game and had a great time.  I’m glad she talked them into going because it’s so easy to just stay at home and watch it on TV.  They can now say they were there when the Tigers won the 2006 American League Championship. 

October 6, 2006 - Kelly was unable to go to ECP on Wednesday because of a bad headache.  She vomited once in the morning.   She was able to keep it under control and actually eat around 1:00.  Dave was worried because he was switched to afternoons and was worried that she would get dehydrated and we would be back in the hospital.  Thankfully, that didn't happen.  She did go to ECP on Thursday morning and to clinic at 1:00.  They badly want to get her high blood pressure under control.  She also complained to them about her acid reflux enough that they have given her another referral to the gastro doctors and changed her protonix to nexium.  We had a lovely afternoon.  Went to Macs for salmon salads and to Rolling Hills for a 3-mile walk thanks to the weather.  

Patrick (Dave's brother's middle child) and Wendy are getting married tomorrow!  We are looking forward to the celebration.  

This week's Pictures of the Week are all about Austin.  Remember...he raised $600 at his school for the Light The Night Walk.  He's special and we love him dearly.  

October 1, 2006 - The Light the Night Walk on Friday was wonderful.  We raised approximately $2,000.  Austin (my sister Ruth's son) raised $600 on his own fundraising at his school this week.  We are still amazed at the generous support we received for this occasion.  Overall, the Light the Night Walk raised over $26,000.  

We had a large group walking - Besides Kelly, me, Dave and Amy, other family members included Ruth, Austin, Danette, Bob, Trevor, Mackenzie, Jean and Linda.  Friends included Bettina, her son Damian, Diane and her husband David.  Ruth works with Bettina and Diane at Ford.  Mackenzie's friend Natalie was there along with her Mother.  I extend my heartfelt thanks to all of those that joined us.  It was the first fundraiser that we, as a family, participated in together so it really touched my heart at the generosity of not only those that came to walk with us but also the support from those donating to our fundraising efforts.  I sincerely thank you from the bottom of my heart.  

So, of course, we have GREAT Pictures of the Week so be sure to check them out.

Kelly had to go in for blood draw on Thursday.  They called her on Friday with instructions for her to drink as much as she can because her kidney function levels are low.  Her platelets held at 63 and her white count and neutriphil went up slightly.  So at least her counts seem to be turning around, thank goodness.  I'm hoping her platelet count recovers quickly because she has bruising all over her arms and legs.  She went to the 212 Art Center on Friday to finish her mobile but that didn't happen so she brought it home to finish.  Her creativity is so amazing.  I'll try to put a picture of her mobile on the website once she's finished.

Once again, I want to thank everyone for the tremendous support we have received not only for the Light the Night but also those keeping us in their prayers.  

Thursday, September 28, 2006 - Hallelujah!  Hallelujah!  Praise the Lord!  Kelly's bone marrow results came back clear of leukemia.  The short phone call from one of the PAs in the clinic said her bone marrow biopsy looked excellent.  Thank you Lord!  What a relief.  I'm sure we'll hear a more thorough report of the results at clinic next week.  Now, she just has to get rid of the infection, start back with physical therapy to strengthen her back and get her stomach straightened out.  Upon discharge, Dr. Yanik told Kelly to stop taking Enbrel so that is one medication gone.  He wants to take her steroid dosage down to 8 when she goes to clinic on Oct. 4th.  She will get ECP at that time and schedule again for 4 weeks later.  Kelly is apprehensive about cutting back on the ECP because she says it makes her feel good.  But her GVHD seems to be doing better so the less invasion of her body, probably the better.  Hopefully, they can stick to reducing some of her medications.

I forgot to post that Chandra (a family friend forever) delivered Macey on Saturday.  She weighed nine and a half pounds and was 23 inches long.  A big baby.  Congratulations to Chandra & Jason and we hope to meet Macey soon.

I learned on Tuesday that Boone Cox passed away.  I extend my deepest sympathy to his Mom, Dad and sister.  I believe I noted in the journal before that Boone's Mom, Kelly, sent me an e-mail saying she did a search on the Internet and Kelly's website came up.  Boone fought leukemia for nine months.  He had a bone marrow transplant in early August, which took a toll on his body.  His family maintained a Carepages website that I tried to read on a daily basis.  Boone and his family will be in our thoughts during the Light the Night Walk for the Leukemia & Lymphoma Society tomorrow night in Gallup Park.    

Tuesday, September 26, 2006 - Kelly arrived home last night around 9:00 pm.  The bone marrow procedure went very well.  Dr. Yanik did the procedure, which he has not done for a while but I think that was due to me asking for Irene Ryan to do the procedure.  Another factor for it going so well was the SWAT team.  I told them that in the 4 years we have been going through all this, and the number of bone marrow biopsies that Kelly has gone through, I can't believe we've never heard of them.  The guy on the team said they only do inpatient bone marrow biopsies.  They provide sedation during the bone marrow biopsy that helps with the pain and also helps take some of the memory of the procedure away.  I have sat through many of Kelly's bone marrow biopsies.  I believe she has had, at the very least, 8 bone marrow biopsies.  When they extract the liquid portion of the marrow, she usually lets out an "OHHHH." followed by less intense "Ohhhhs" with the following extractions.  I did not even hear her whimper during this procedure.  I learned that the SWAT team only provides sedations for inpatient procedures.  From now on, I don't think we will have a bone marrow biopsy done unless it's inpatient.  

Today, Dr. Yanik called just after 9 am.  He was not calling about the bone marrow biopsy results (thank goodness) but that Kelly's blood culture draws from yesterday came back positive for a staph or VRE infection and that she needs antibiotics.  He did not know if he was going to admit her or try to do it through infusion at the cancer center.  We all talked about it (me, Kelly and Dave) and came up with questions to ask for the most part doing it outpatient (didn't want to be back in that hospital).  They called back telling us to go to 7th floor Mott for an infusion of Dapcomycin at noon. That wasn't without issues either.  Kelly noticed clots in her tubes that should have been flushed out.  Good thing the pump had problems because it made Kelly notice the blood that was staying behind in her lines.  I feel like someone is watching over us.  

She will need 14 days of Dapcomycin infusions so tomorrow the visiting nurses will come to show how to do the infusions at home.  We did this during her magnesium infusions right after her transplant over a year ago.  

So...we are feeling better about the bone marrow biopsy results.  We feel Kelly is still in remission and her counts were low because of an infection.  She has to go for blood tests on Thursday.  

Here's another thing to hope and pray for...The Light the Night Walk this Friday.  We (Kelly, me, Mom, Ruth, and Danette) have made a lot of jewelry and received tremendous donations for the Leukemia & Lymphoma Society because of our jewelry making.  Friday will be a very special moment for me and my family.  Amy and Austin will be joining us also.  Hope and pray that Kelly continues to feel good for Friday.  As always, more to come.

Monday, September 25, 2006 - I'll try to make a quick update here.  Kelly's vomiting was under control by Friday evening.  Dave stayed the night and i went early Sat. morning because Amy and I were going to attend Patrick & Wendy's wedding shower.  Patrick is Dave's oldest brother's son.  I returned Sat. evening and spent the night.  She no longer had a fever.  Her temperature did get up to 101.  Early Sunday morning Dr. Yanik came in to say that she has him puzzled.  Her cultures so far have not grown anything so no infection but he looked back to notice her blood counts have been going down since mid-August.  Thus, he wants to do a bone marrow biopsy.  The dreaded bone marrow biopsy test.  Something we never want to hear.  Sent us in a crying frenzy.  Dr. Yanik said he needed to see how many cells are in the bone marrow and what they are doing.  Kelly asked the brave question, "Will you be looking for leukemia cells?"  He said, "Yes, but that's the last on my list."  I immediately asked if Irene Ryan could do it.  Irene did so many bone marrow biopsies on Kelly and the one that the BMT team did over a year ago was weird.  Deb had her laying on her side and did the biopsy through the hip that was on the top.  It was really strange and I think even the assistant in the room felt it was strange so we didn't want to go through that again.  Not that we don't like Deb.  She has been wonderful when it comes to our clinic visits.  We feel she really looks out for Kelly.  So Dr. Yanik said, "I'll see if Irene can do it but if she can't I'll do it first thing tomorrow morning."  Like I said, it had Kelly extremely upset.  She was screaming, "I was fine until I came in for that IVIG on Thursday.  Now look at me."  All of this just makes you wonder.  I wish I could know what a BMT doctor would do in our position and have often asked them what would they do if this was your child.  We asked if Kelly could walk around the hospital.  Dr. Yanik said, "Absolutely, get some fresh air."  So Kelly took two walks yesterday.  She's amazing.  Once you get her out walking, she doesn't want to quit.  Of course, we were stopping to look at all the art around the hospital, which luckily they change all the time.  Dave. Kelly and I took the first walk that lasted about 1-1/2 hours with art browsing and the second was when Amy came in the evening, which lasted an hour.  Kelly and I watched one of her favorite shows that we missed - America's Next Top Model - which was two hours and ended at 10 and then she took a shower, which I know made her feel much better.  Not good enough though because around 2:00 her nurse came in to take vitals and her blood pressure was 159/106.  This worried the nurse so she called the on-call doctor and she said to take a double dose of Izradipene (sp?), which was scary also because Kelly has bottomed out when taking one pill while at ECP.  Then caused us to have another crying spell.  The nurse gave her Ativan also and she finally settled down to sleep.  I got up around 4:00 (the blood pressure stuff happened around 2) and the nurse said her blood pressure went down to 100/61, which seems low to me but she thought was perfect.  Crazy.  So Dr, Yanik visits this morning and the bone marrow biopsy will take place today at 3:00.  The SWAT team (the people that prepare the slides, etc.) were booked until 3.  He said there are very few patients that he remembers their actual transplant but he remembered hers and started talking about her Imitrex reaction and her 105 fever and I knew he remembered and that touched my heart so brought the tears.  I hate this but I guess it's better to let the tears go so that's what I do.  I'm sure they are used to it.  So, I came home to clean up and am now heading back to the hospital for the dreaded biopsy at 3.  Kelly says she's not upset about the procedure as much as she is about the results.  However, we talked about the concerns with her bones being fragile due to steroids and Dr. Yanik said that nothing should happen during the biopsy to damage or fracture her bones.  Cross your fingers and pray.  He is discharging her after the biopsy so we should be home tonight.  The results should come in on Thursday.  More to come.

Friday, September 22, 2006 - Yesterday, I had some time to compose my journal entry at work with the intent of coming home and posting it to the website.  HOW THINGS CHANGE.  I dropped Kelly off yesterday morning at the hospital for ECP, then a clinic appointment and then an appointment for IVIG.  They were able to get her in sooner but that did not make things go faster.  She had a reaction to the IVIG again so they loaded her up with Ativan and Demirol and slowed the infusion way down.  She finished the infusion at 8:30 but her blood pressure was sky high - 139/105 was one reading.  This concerned the nurse so she told Kelly to take the medication that she is suppose to take if her blood pressure is over 135/85 either number and wait a half hour to see if her pressure went down.  It didn't go down but they had to close and even stayed until 9:30 to feel better about sending her home.  They told her to continue to check her blood pressure. and if she developed a headache or any other symptoms, instructed us to call the on-call doctor.  When we arrived home, she ate some chicken noodle soup and we went to bed.  Around 1:30 a.m. Kelly yelled at me, "Mom, I'm going to throw up."  After vomiting she took her blood pressure and it was 136/100.  I paged the on-call doctor.  He said vomiting is a side effect of the IVIG but I expressed my concern about her blood pressure.  He finally told us to go to ER for evaluation.  However, Kelly said she was feeling better (of course, you always feel better after vomiting) and she took an Ativan and decided to see if that would stay down.  The doctor happened to call back because the paging service gave him the wrong last name so I told him she wanted to wait it out because she was feeling better.  He said, "Okay, give me a page in an hour to let me know how she's doing."  After vomiting her second time during that hour she was ready to go to the hospital.

Upon arriving at the hospital, her blood pressure was 145/103 and her temp was 99.4.  It took a while for them to come in and order medication for her.  I hate that part of going to ER.  The nurses can't do anything until the doctor writes an order.  It sucks big time.  When they finally gave her Ativan, Dilaudid and Phenergan, Kelly was more comfortable but was dreaming and talking in her sleep.  She wasn't into a solid sleep at all.  Anytime a nurse or doctor would come in to see how she was doing, she would say off the wall things.  But that didn't last long before she was very uncomfortable again and I had to make the case that she needs BOTH Ativan and Dilaudid again based on the amount of pain medication she takes on a daily basis.  The resident was on the fence as to admitting her and left it up to me at one point to stay or go home.  I didn't feel she was stabilized so I told him we would stay.  Her blood counts were low and blood pressure was still high.  It amazed me that they did not check or do something about her blood pressure but I guess a distressed patient can have high blood pressures also.  Her potassium level was so low that they gave her 20 mgs of potassium.  Before too long, the resident stopped by to say that Dr. Yanik wanted to admit her.

So Kelly is once again on Mott 7th floor room 92 (we've had this room before).  Dr. Yanik said that sometimes the IVIG solution is so thick that it stirs up cells that can be infected so she may have a blood infection so they took blood cultures of her Neostar lumens.  I expressed my wondering if the IVIG is causing the vomiting spells because I believe she had IVIG in June just prior to our vacation when she was ambulanced from Grayling to Mott because of vomiting.  He once again explained the blood infection thing and is going that route until tests prove otherwise.  So, she's on antibiotics now.  She's still vomiting (it's almost 4 pm) so I hope they get that under control so she's feeling better soon.  My heart is breaking for her right now.  She was feeling good this week - getting around pretty well, exercising, going to the 212 Art Center for a mobile-making class and had plans to go to a meeting this morning there.  She was so disappointed this morning when she couldn't go and had me call Margie to let her know.  We were supposed to celebrate Danette's birthday tonight by going shopping and out to eat.  She was supposed to go to Jackie's house tomorrow for a housewarming party.  She was going to make her favorite cheesecake.  She has made all these plans only to have this happen.  She deserves to feel better.  She fights this thing every minute of every day and deserves to feel better more then she does.  I haven't had any sleep and I'm crying now so I'm going to bed.  This is so tiring to me and I'm not even sick.  That's why I feel so bad for Kelly because I can't imagine how she feels.  

Picture of the Week - the #1 winner at the Harvest of the Arts.

Thursday, September 21, 2006 – Kelly went to ECP on 9/12 to find that Dr. Yanik’s mother died and that is the reason they cancelled her clinic appointment.  When she arrived at ECP, her blood pressure was very high – I believe she said it was 151/110.  The nurse told her to take her blood pressure pill, which made her blood pressure drop very low.  She started having a reaction to the low pressure when Deb stopped by to see her in ECP.  She was shaking, broke out in a sweat and started crying.  Deb paged Dr. Choi to come see Kelly.  Luckily, this didn’t last very long.  Dr. Choi felt they were weaning her off the steroids too quickly so she told Kelly to up her steroid dose from 8 mg to 16 mg.  Kelly felt they were weaning too quickly so she was okay with the decision to increase the Medrol.  She had ECP yesterday and today.  She goes to clinic at 1:00 this afternoon and then will get IVIG after that so she has a full day at the hospital today. 

This past weekend Saline had a Harvest of the Arts event and the Two Twelve Art Center had an entry in the vegetable art contest.  Kelly along with Margie Bovey and other ladies created Bert & Ernie and they won first place.   My nephew Trevor won 2^nd place in his age category 10-18 years so that was awesome!  Kelly went to a mobile making class at the Art Center last night and plans to go again next Weds so I’m so happy that she is able to participate in these things.

My nephew Austin has decided to participate in the Light the Night Walk next Friday with us.  He is fundraising at his school by collecting cans and bottles.  How nice! 

September 11, 2006 - My heart goes out to all those affected by 9/11 five years ago.  It's a date that will forever be in the memories of millions of people.

Kelly has been having good and bad days.  The weaning of the steroids sometimes cause her to ache all over and make her lay in bed all day.  There are days though that she goes all day long and exercises, gets on the computer, takes a shower, etc.  So it's either all or nothing.  You never can tell what the day will bring.  She received a call today saying that her clinic appointment was cancelled for tomorrow and she only has her EPC appointment at noon.  Deb is supposed to see her in ECP tomorrow.  This surprises me because she is still weaning from the steroids.  I guess that's okay because there is really no reason that we need to see the doctor with the exception of further direction as far as weaning.  Last week, we showed up for a clinic appointment that was changed but they didn't bother calling to tell us.  Ironically, it's the appointment we had tomorrow but they cancelled that today so we wonder what in the heck is going on.  

Here's something really weird.  Kelly received an e-mail from a young lady with the name of Kelly Hatfield.  She "Googled" her name and came up with Kelly's website.  She's from Liverpool, UK, and has the same middle name as Kelly, which is Marie.  She is 23 years old.  That's amazing!  

The Dept. of Psychology staff members have been very generous in supporting our Light the Night walk.  I'm always making or reworking jewelry in my spare time.  Really, it's not spare time because some time should be spent tending to household matters but, as we all know, that will wait.  I'm having fun and being creative.  Danette is pretty caught up in the beading as well.  She has even sent Mom home with beads.  Ruth does beading when she can and wanted to this Sat. but I couldn't make it - had to tend to household matters that wouldn't wait.  Well, enough about our current obsession with beading.  I'm just glad we started it and people have been so responsive.  Thanks to all those that have donated to the Leukemia & Lymphoma Society by buying our beadwork.  

Sorry for not posting Pictures of the Week.  I should be posting some pictures that Kelly has taken soon.

August 27, 2006 - Kelly went to clinic on Tuesday.  She was given a schedule to follow to taper down on the steroids.  Dr. Kitko wrote it down for her.  She has not been feeling well this weekend.  We believe it's from the tapering of the steroids.  She's definitely tired of feeling bad.  She had ECP on Tuesday and Wednesday.  Those days she was pretty wound up from the increase of steroids.  This weekend she's been in bed until night time.  I think she has her days and nights mixed up.  

We (Me, Kelly, Mom, Ruth, Danette and Kenzie) have been making beaded necklaces and bracelets to raise money for the Light the Night Walk at Gallup Park.  All money we raise will go to the Leukemia & Lymphoma Society.  Bob (Danette's husband) made four stands for us to display the jewelry.  They're great  - Kelly and I want one for our jewelry.  Dave said Bob should sell those.  I took most of the jewelry to work.  The psychology faculty, staff and students have been very supportive.  By Thursday my supply had been picked over so we are meeting again today to make more jewelry.  It's fun and it gets us together.  Orange is the color for leukemia awareness and green is the color for lymphoma.  I've made several orange bracelets but need to make some green.  

August 18, 2006 - Well, Kelly has not had the best week.  She spent most of her time in bed, not feeling well.  Her mouth was bothering her a lot and felt like it was swelling.  She also was complaining of her lips turning blue.  A call to the doctor lead to a clinic appointment yesterday.  Sure enough - GVHD has raised it's ugly head again.  Dr. Kitko prescribed her to take 64 mgs of Medrol for 3 days and then to cut down to 32 mgs/day until she goes back to clinic on Tuesday.  Then she plans to do a rapid decrease of steroids and go no lower then 6 mgs/day because it seems every time she gets down to 4 mgs/day, GVHD pays a visit.  After the first 32 mg dosage yesterday, Kelly was already feeling better.  I worked yesterday so didn't know until I arrived from work that her entire face turned red and blotchy, which I could somewhat see on Wednesday night while we were taking our walk.  Dave has been going along and walking Nikka.  We've been walking in the new neighborhood behind our house where there are hardly any dogs.  Nikka goes ballistic when she sees a dog while walking.  We need to watch more Dog Whisperer shows, I guess.  Anyway, I got off track when letting you know that she was at least walking.  Today she is still red and swollen but is out of bed already at 10:00 a.m.  This is good because the past several days she's stayed in bed all day.  

Pictures of the Week - Up north - Check it out.

August 11, 2006 – A lot has happened since the last entry.  Last Thursday, I went on my somewhat annual trip up north in celebration of my Mom’s birthday, which was July 31^st.  Charolotte and Pam went with us.  We had a wonderful time.  However, on Friday, I called to see how Kelly and Dave were doing and he told me they were on the way to the emergency room.  I really thought he was kidding me but, unfortunately, he wasn’t.  She started vomiting again and couldn’t quit.  I kept on telling the group, “I know what’s going to happen.  She’s going to be admitted and they’re going to do an endoscopy.”  Sure enough, she was admitted.  She eventually started running a fever of 101.  She also had diarrhea this time.  They did a CAT scan and MRI over the weekend and both were negative.  They did an endoscopy on Monday and released her Monday afternoon.  They took five samples to biopsy and we were informed of the results yesterday at clinic.  Everything was normal.  No graft vs. host disease (GVHD) of the upper intestine - Hooray!  The only thing noted was that several polyps had developed in her esophagus that they biopsied to determine if they were precancerous.  They were not.  Kelly wished they would have removed them, but I was happy that they left them alone, especially because her platelets had dropped to 114 that day.  Her white blood count and neutriphil are slightly elevated, which they say is probably because she’s fighting some type of virus.  So, we still don’t know the exact cause of Kelly’s stomach distress these past 3 weekends.  It could be a virus that she is taking longer to get over because of her immune deficiency.  It could be all the pills that she puts in her stomach round the clock every day.  The GI doctors recommended that she take her protonix 30 minutes prior to a meal and the famodidine, the total 40 mgs, at night before bed.  Dr. Choi also gave her a prescription for caradine, not sure if that’s the correct spelling.  This is supposed to coat her stomach prior to eating.  So we’ll see how that goes.  She had ECP on Weds. & Thurs. this week.  So she’s feeling pretty good right now.  We just hope she doesn’t have any vomiting episodes this weekend. 

August 2, 2006 - Friday night Kelly had a vomiting episode that lasted about 3 hours.  She was down in bed all day Saturday but could at least eat.  We think the episode was caused by her taking Valtrex, which was prescribed to help her ear problem.  Since that time, she has been full of energy.  Walking on the treadmill almost every day and doing strengthening exercises.  She is truly amazing.  They also called her for ECP on Monday due to a cancellation.  They cancelled her Tuesday morning appointment due to a lack of nurses but then called her again because of a cancellation.  We figure, the more ECP, the better.  She's been feeling pretty good.  Made two batches of zucchini bread.  We planted a garden this year. 

On Sunday, July 30th, we went to Buddy's Pizza to celebrate my Mother's birthday (Meemaw).  There was a clown there making balloon creations.  Austin (my nephew, Ruth's son) begged the clown to visit his grandma.  He did and made my Mom a hat that had antennas that kept on hitting Kelly and my Dad head any time she turned her head.  I hope to make them pictures of the week soon. Kelly was taking pictures with thedigital camera that she ordered.  

Amy is doing well in Riverside, California.  Her boyfriend, Tom, spent the last week visiting her.  She will be home the end of August.  She doesn't seem to be too much in a hurry to come back but says she will adjust when she's back.  That's Amy!

I am off on a "chicks weekend."  I am following what they say about watching a "chick flick."  I am going with my Mom, Charolotte & Pam up north for a trip that has been pretty much traditional to celebrate  my Mom's birthday, which was July 31st, Monday. Hope we don't burn up.  They temps have been in the 90s for the past week.  All kinds of warnings out there about conserving energy.  

Pictures of the week - Click Here!  

July 29, 2006 - Kelly saw Dr. Kitko in clinic on Thursday.  She said that at their Monday meeting Kelly took a good deal of time to discuss.  They know about our concern that the doctors have their own way they feel that Kelly should be medically treated but they are so different.  She said they wrote up a plan that each doctor will follow.  The plan right now is to leave her steroids at the current dosage (4 mg/day) and taper off the immunosuppressant drugs with the first drug being Enbrel.  On Monday and Wednesday, Kelly developed sores at the back of her mouth that looked like blood blisters.  Kelly and I were concerned about this being GVHD popping up again as active rather then chronic, which would mean the doctors would go up on her steroids.  She is so tired of the way she looks and feels.  She just keeps on saying that she wants to be normal.  We desperately want that also but it just doesn't seem to be getting better.  These chronic problems just won't go away so it does have an impact on her day-to-day life.  Even last night she complained of a headache and started vomiting around midnight until about 3 a.m.  She was finally able to keep Zofran down for the nausea and fell asleep.  

The one good thing out of the clinic visit was her counts.  Almost every one of her counts were normal.  Her platelets were 169.  This is the first time we've seen across the board normal counts for the past 4 years.  So that was a good sign and eased my mind about her mouth sores.  Dr. Kitko asked Dr. Levine to come in to take a look and he said it was chronic GVHD.  He talked about the doctors meeting on Monday and actually looked on the computer in the room to see how many doctors were discussing Kelly's case.  There were nine doctors at the meeting and they all agreed to the plan, which he pointed out he won, that was the hold of the steroid dosage and to wean other drugs but ECP will still continue for Kelly every 2 weeks.  In fact, Susie called last night to see if Kelly wanted to go in for ECP on Monday due to a cancellation so they are still trying to get her in when appointments become available.  Kelly will only go to clinic once a month so she doesn't have to see the doctors every two weeks when she is scheduled for ECP.  Of course, we can call whenever we have a concern and they will see her.  

I'm hoping she is better this morning and feels like getting out of bed.  We shall see.

July 26, 2006 - Kelly hasn't been feeling the greatest since the last entry because her ear is stuffed up and ringing.  Since her tolerance for pain is high, it must really be bothering her because the day after she saw Dr. Kitco, she called the clinic to see if she could come in for them to take a look at it.  They finally scheduled her to come in the next day and that resulted in her getting into the ear, nose and throat specialists a lot sooner then Oct.  She had an appointment yesterday.  The BMT doctors thought she might have water behind the eardrum, but the specialist feels that she has nerve damage.  She did an audio test to determine the amount of damage.  I believe Kelly said it was not badly damaged and the doctor said it may get better or she would just get used to it.  He said they usually give steroids to help the problem but since she's on steroids and is immunosuppressed he would leave it up to the BMT doctors to determine the course of treatment.  They did schedule her a CAT scan tomorrow morning at 7:45 and an MRI next Sunday (I believe) at 5:45 am.  They want to make sure that nothing else is going on.  I am confident that everything will come back negative.

Dave and I made a quick trip up north this past weekend to take back things that were packed by Lois, Ron and Dave that belonged up north and bring back things that belong here but are up north (dog's invisible fence collar, my hair fixing things, Kelly's journal, among other things).  Good thing we did.  We found remnants of Kelly's vomiting spree.  I think Dave was in such a hurry to get out of there that he didn't do the things that we normally do before we leave the place.  Kelly's back was bothering her on Friday so on Saturday morning when she woke up we talked about it and decided a 6-hour drive in the car would not be the best thing for her back.  So she hung out at home, which she probably enjoyed with us not being around, she could do whatever she wanted.  I just made sure there was plenty of food within reach for her to eat.  We returned on Sunday night.  

So tomorrow will be a long day for Kelly - CAT scan 7:45 a.m., blood draw 10 a.m., clinic 11 a.m., ECP 1 pm.  She usually gets done around 5.  Then back for ECP at 8 am on Friday.  We all want to go up north again but I think Kelly is apprehensive about it.  We'll see what happens in the  next couple of days.  We "LIVE" one day at a time and tend to do things spontaneously based on how Kelly feels, which is okay.  We always have many things waiting for us to do here at home.

Pictures of the Week - more of Kelly - click here.

July 19, 2006 - Kelly went to clinic yesterday and saw Dr. Kitco.  Don't know the spelling of her name.  She came by one day with Dr. Levine and is new to the team.  It sounds like the team meets on Monday now.  They are holding everything at this time with Kelly.  Her counts are doing good (her platelets were 149, the lower end of the normal range is 150.  WOW!  I remember Dr. Levine saying that Dr. Kitco had done research about the amount of steroids at this phase of treatment. Today, Kelly says her left ear is totally plugged up and buzzing.  She called the clinic to see if she could come in so it must really be bothering her.  They gave her an appointment tomorrow morning.  Other then that, she must feel pretty good.  Yesterday, she visited her friend Kevin and today she is surprising Jackie at her new house.  She and Katherine have planned this visit.  Jackie just closed on buying a house that's right across the street from Katherine.  So Kelly and Katherine are going to show up at Jackie's door and go to dinner at Le Shish.  Sounds like fun and I'm so happy she's feeling like doing all of this.  

Pictures of the Week - Kelly - click here.

July 17, 2006 - Kelly came home from the hospital yesterday afternoon.  We had an emotional afternoon/night Saturday and Sunday.  Kelly, again, was upset wondering if all of this was worth the effort.  She was crying a lot, I was crying a lot, I'm sure Dave was crying also.  She has been so strong through all of this.  I just feel like she was down because of all the meds they have been pumping into her - antibiotics, then all the meds to turn around a reaction to the antibiotic - Benadryl, steroids, and some other medication for itching, not to mention all of the other drugs she takes.  I was very concerned about her spirit the past two days but came home today to find her at the kitchen table on her laptop and making phone calls.  She was also eating carrots, fruit, homemade soup that I put in front of her so I feel all is well.  She goes to clinic tomorrow to follow up on the discharge from the hospital.  They want to make sure that she is eating and drinking enough or else they threaten to do another endoscopy to see if she has GVHD of the upper intestine.  It is so hot here - in the mid 90s.  I wish it was cooler so we could take a walk.  

Dr. Cooke agreed with Dr. Levine that if her nausea and eating/drinking were not better, the endoscopy was necessary.  The one point that he disagreed with is that Kelly is a perfect patient for ECP.  Dr. Levine wanted to cut her back to once/month.  But I questioned Dr. Cooke..."Dr. Levine says she has chronic graft vs. host disease of the mouth and that is a part of the upper intestine.  If this is true, why would she be decreased for ECP?"  Dr. Cooke said that Kelly definitely needs to keep up her regimen with ECP.  He also said that he believes any amount of oral steroids is too much so he would like to see the dosage decreased as Dr. Yanik would like to do.  So, I'm now beginning to feel that we have so many doctors with different methods of treatment.  It's good to have different doctors and physician assistants looking at her all the time but trying to sort out the proper method of treatment for Kelly is a real chore.  I am on the edge of joining a BMT chat forum to see if I can obtain more information but I feel, first of all, that each patient is so different and has their own set of circumstances that I would not gain so much knowledge as I would emotional attachment to what other people are going through, and secondly, I just don't have the time.  I'll just concentrate on Kelly and what is best for her.

Next step, get a referral from clinic tomorrow for physical therapy and make sure she makes strengthening exercises a part of her daily or every other day routine.  She wants to get out of that back brace so bad.  While I was there yesterday, she actually got out of bed to use the bathroom twice without the brace.  See what I mean about her being so strong and determined.  

July 15, 2006 - Kelly was doing better last night and we had one of the best nurses, Ann, so I felt okay to come home to sleep for the first time since she's been in the hospital.  I took the time to add the benefit pictures that Dave took.  Kelly has a lot more pictures that I hope to add later.  Please take a look by clicking here.  Dave is at the hospital right now waiting to see Dr. Cooke to see what he has to say about Kelly.  

July 14, 2006 – Kelly woke up yesterday saying that she felt better.  She started off going down for an x-ray of her back at 8:00 a.m.  When she came back, she was still experiencing nausea so didn’t feel like eating.  Dr. Levine came in around 10:00 asking Kelly if she was ready to try to get off of fluids so she could go home the next day, which is today.  Kelly looked at me and I said, “She’s been up for 2 hours and says she feels better but still doesn’t feel like eating so I think we should wait until Saturday to leave.  Around noon they took her for an ultrasound of her abdomen.  Then at 2:00 they took her for a pulmonary function test, which is routine for a BMT patient but Kelly has been unable to have one because of her brace.  When she returned, she slept.  Dave came up to relieve me around 3:30.  He called not too long after that saying that it looked like she was getting a rash.  By the time I came back to spend the night, she was up and eating.  She requested that I bring a grilled cheese.  She even felt like taking a walk around 11:00.  We mentioned the rash to the nurse and she noted on her chart to take a look at her body to see if she still had the rash because it was probably caused by an antibiotic (Vancomycin) that she has been on since Tuesday.  So at 6:00 we took a look and the rash was worse.  Kelly fell back to sleep until they came to get her for an ultrasound of her gallbladder.  When she returned, she was in tears saying she didn’t feel good at all.  The rash was worse.  Her face and neck were all red.  The rash was on her arms and upper legs.  I saw Becky, the physician’s assistant on the floor, while Kelly was gone and told her about the rash.  She and the fellow doctor came in to take a look and decided she should have Benadryl.  Since it was taking them so long, I told the doctor that I had some because of my poison ivy outbreak so she told me to give her two tablets.  Dr. Levine came in first thing after discussing Kelly with his team to say that he was going to give her another dose of Benadryl through her port and if the rash and itching wasn’t better by early afternoon, he would give her a one-time dose of steroids.  I can’t believe it but Kelly didn’t sleep at all after the Benadryl.  Once she got the steroid, she fell asleep for a few hours.  She was able to eat a little breakfast and a grilled cheese and apple this afternoon. 

Because of still being nauseous, Dr. Levine is now thinking that it’s GVHD of the upper intestine rather then food poisoning.  Once again, he asked Kelly when she felt she could go home.  This time Kelly didn’t even look at me to ask.  She said, “Let’s try for Sunday.”  I’m not surprised because he asked at a time when she was feeling really bad.  So, if all goes well and we don’t have anything else creep up, he will discharge her on Sunday and sending her home on IV fluids if she doesn’t start drinking herself.  Actually, Dr. Cooke starts on the floor tomorrow so we will see what he says. 

After Dr. Levine told Kelly that he wanted to keep her on 4 mg of Medrol and reduce the cyclosporine, she was kind of upset.  She was looking forward to the clinic visit yesterday when Dr. Yanik said he would reduce her dosage to 2 mg.  She’s so concerned that the swelling in her face and bloated feeling in her stomach won’t go down.  So I said something to Becky about it.  She was going to try to be the mediator between the two doctors and let us know the plan.  So today Dr. Levine came in again explaining that 4 mg of steroids is a little bit more then what a human body produces on it’s own and that the dosage is no longer affecting her back.  He also said that her swelling should go down so she felt better about that.  But the whole GVHD I am now wondering about.  It’s my feeling that she’s nauseous because she’s taking a load of medicine and pills on a relatively empty stomach.  My stomach would be all messed up.  So we shall see what Dr. Cooke says tomorrow. 

All of the tests thus far have come back negative.  The blood cultures from Grayling, the back x-ray, the gallbladder ultrasound.  We don’t know why the abdomen ultrasound was ordered.  Kelly is awake now (7:30 p.m.) and ate another grilled cheese.  Her rash looks better but she is still itchy and hot.  It’s been a kind of upsetting episode this time.  This afternoon she was in tears again and questioning whether all of this was worth it.  Of course, that made me teary-eyed as well and I told her how proud I am of her for being so strong and that it is okay for us to cry sometimes, in fact, we must release it every once in a while to remain sane through all of this.  I am certain that she will continue to improve and be out of that darn back brace by the end of the year.  Dr. Levine has predicted this also.  I can tell she’s feeling better because she had me buy her a crossword puzzle book and she’s working it right now.  Thank goodness!

Wednesday, July 12, 2006 -  Vacation was going good until yesterday.  Start off with the good stuff.  Arrived on Sat. July 1st and was joined by Tonya and Stephanie.  Kelly actually drove Tonya's car behind me and Dave was following her.  Dave and I were feeling a bit shaky about it and were discussing it by cell phone but since she was surrounded by the two of us, we felt it was better then her trying it alone, which believe it or not she has wanted to do.  She's so independent.  Anyway, we had to go up 127/27 north because we heard of a 14 mile backup on 75.  All went well as far as the drive, thank goodness.  On Sunday, Shannon arrived and we were planning a nice day on the boat, however, Tonya and Stephanie decided to go home.  That was okay because the four of us (Dave, Kelly, Shannon & Me) were able to spend a nice day on Higgins Lake.  That night, Shannon played her guitar and sang some songs that she wrote.  She had promised to do this because we missed her at the Heidelberg Benefit.  She's awesome!  Dave had her tuning his electric guitar as well.  

Kelly had her days when she would get up and about early and she had her days when she would sleep in.  One of those days, Dave and I went out on the boat and were met by Jerry and Cathy at the lake.  Unfortunately, it wasn't the greatest lake day.  Kind of chilly.  So Kelly made the right decision to stay home.  We really didn't have great lake weather so, unfortunately, did not get out on the boat like we wanted.  Higgins Lake did not have fireworks on the 4th of July because of some liability reason.  We went out on the boat that day but was too tired to go to fireworks at Roscommon or Grayling and decided to stay at the cabin and watch movies and sleep.

I drove to Gaylord on Saturday, July 8, to pick up Ruth, Austin and Grant while Zeljko took a trip to the UP.  Once again, the weather wasn't the best for the boat but those kids are tough and did some swimming.  Dave took the tube but the kids weren't interested so Ruth said she would go on it since Dave went to the trouble of bringing the tube along.  Unfortunately, Dave forgot part of the rigging for the tube so Ruth couldn't go.  Darn!  That would have been fun, I'm sure.  We'll get you next time, Ruth.  Zeljko stopped by in the evening and we ate and had Smores and then they took off.  

On Sunday, Lois and Ron drove up to join us.  The weather, once again, wasn't the greatest so off we went to Turtle Creek Casino.  We were all able to sit down at a Black Jack table together so we had a lot of fun with that.  We hung out at the cabin on Monday and then on Tuesday things started going downhill.  Kelly woke up around 11:00 and sat down at the kitchen table to eat.  Before too long she was in the bathroom and called me to give her a wastebasket.  She was nauseous.  I thought this was something that had occurred in the past and that after she went to the bathroom she would feel better and it would be over.  OH NO!!!  She ended up back in bed and was vomiting. We didn't bring the thermometer with us so Lois and I ran to the store to buy one.  Her temperature was 98.4 so that made us feel better.  I called the clinic to let them know what was going on and was waiting for their return call.  In the meantime, I was discussing with Dave and Ron which hospital to go to - Traverse City, which is the hospital that Dr. Levine had said to take her to when up north, or whether to drive the extra hour to go to U of M.  While still waiting for a return call from the doctor's office, I walked in to see how Kelly was doing and she said, "I want to go to the ER right now.  I've got to get something for this nausea."  At that moment, it hit me that we should just go to the Grayling Hospital.  They could probably get her nausea under control and we could come back and go to clinic on Thursday, as planned, and everything would be fine.  OH NO!!!  It must be noted that during all this time I learned that Dave had an episode with his stomach on Monday night that caused him to break out in a sweat and get nauseous.  Lois and Ron were also complaining of stomach discomfort but we figured it was due to other reasons.  Dave and Kelly were the only ones that ate some salmon that I bought from Glen's.  When I opened it to marinade, I noticed a fishy smell but didn't think much of it because a lot of fish smells that way.  More on this later.  

As I was pulling up to the Grayling Emergency Room, the BMT clinic was returning my call and gave me the number that the ER doctor could call.  I must say that the people there were absolutely great.  They did a workup on Kelly, tried to get her comfortable and then called to speak to Dr. Yanik.  Kelly was very restless and uncomfortable with her nausea and vomiting.  They ran some tests, blood counts, x-ray of her abdomen, urine analysis, etc., and I was hearing from the Physician's Assistant that everything was coming back normal with the exception of her being concerned with Kelly's platelet count, which was 126.  We informed her that Kelly's platelet count was usually on the low side and that 126 was good.  I was almost certain that we were going back to the cabin, but NO!  Dr. Yanik wanted Kelly transferred by ambulance to Mott.  I couldn't believe it.  We had pretty much determined that she probably had food poisoning from the salmon and that things would be okay.  But to hear that Dr. Yanik wanted her transferred was a shock.  So, off we go by ambulance to U of M.  I rode in the front with the driver.  Dave brought me something to eat and we talked about what he should do next.  He went back home and Lois and Ron helped him pack everything so he could drive home.  Thank you to both of them for their help!

It was a bumpy ride, which I was hoping that Kelly's back weathered the ride well.  In talking to John, the driver, he said they could go up to 100 mph but he would keep it between 70 and 80.  Since she wasn't critically injured, he did not use lights or extra speed.  We ran into construction and a severe thunderstorm but made it there in 2 hours and 30 minutes around 8:30 p.m.  Kelly did not settle down or get comfortable until after midnight.  She woke up at 4:00 a.m. and actually went to the bathroom without her back brace.  She had been feeling like she could go without it lately so I was going by what she was feeling and went along with her desire to do it without the brace.  Everything went fine until she tried it again in a few hours and she felt her back crack.  OH NO!!!  We think she may have another compression fracture.  It doesn't have her in excruciating pain but she does feel it when she moves.  Needless to say, we put the brace on now every time she gets up to go to use the commode.  

I saw Dr. Levine today and he is sure this is a case of food poisoning or some type of infection rather then GVHD of the intestine.  They will keep doing tests to confirm this and she should be covered by the antibiotics that they ordered the Grayling medical team to administer.  He said he planned to discuss this with Dr. Yanik but he wants to get Kelly's quality of life better by decreasing her daily medication intake and get her stronger by prescribing MedRehab again.  She needs to get stronger so she can get out of the brace.  He said the amount of steroids that she takes daily (4 mgs) is just less then what the body produces normally so he doesn't think that this mishap with her back is because of being on the steroids but because she needs to increase her muscle strength.  I agreed that this was a good plan but the one factor is the pulmonary function test that they have been unable to do on a routine basis because of the back brace.  This is what he wants to discuss with Dr. Yanik.  If they agree, they will reduce her cyclosporine level to half of what she is taking now - instead of 100 mg/day it will be 50 mg/day.  We shall see.

Dave came up to relieve me at the hospital to take a shower, etc.  She developed a fever while being at U/M and started getting uncomfortable again around 3:00.  Even while taking nausea medication, she vomited again.  Her stomach is not feeling swell at all.  The fever kept increasing so they decided to give her Tylenol.  I was able to get a banana and some crackers down her but that came up along with her pills when she began vomiting again.  I hope and pray this is NOT GVHD.  We DO NOT want them to have to increase her steroids again.  I'm on my way back up there for the night.  I'll keep you posted.  

Sorry, no Pictures of the Week until all of this settles down.  An added note, I have poison ivy all over my arms. After we left for the hospital, Lois and Ron noticed that we had poison ivy growing all over in our yard.  I mowed the grass.  Guess I better learn how to identify poison ivy, oak and sumac because this is not the first time that I've had it.  It's not fun, basically because it's very gross looking.  I've showed it to all the doctors.  Kelly doesn't have any spots on her.  Signing off for now.

Tuesday, June 27, 2006 – Another successful trip up north this past weekend.  We caught a lot of traffic when first starting out on Friday.  We tried to go around it by going the back roads but everyone had the same idea.  On Saturday Dave & I spent all morning cleaning the pontoon.  Kelly took it easy until about noon then we went out on Higgins Lake for a few hours.  The lake was a lot calmer then the previous weekend.  No waves knocking us all around.  We went for a walk on the trail, this time a shorter walk.  It rained almost all day Sunday so it was a day to chill at the cabin.  Kelly and I did the long walk while Dave went to try to get a wheel on the pontoon trailer fixed.  It started raining on us at the very end of the walk.  We really tired Nikka, Kelly’s miniature pincher, out.  On Monday, Dave and I went to a trailer company in the morning and came back to find Kelly not feeling very well.  She got up with a lower stomach ache, which makes us scared that GVHD is coming back since they reduced her steroids recently.  She was feeling dizzy, nauseous and broke out in a sweat.  So, we just hung out at the cabin again and headed back home around 5:30.  It started raining again around 3:00.  This weekend starts our vacation so we hope the weather gets the rain out of its system.  Don't forget to check out the pictures of the week by clicking here.

Monday, June 19, 2006 - I'm happy to say that all went well this weekend up north.  Kelly was able to get on and off the boat with no problem and the riding didn't bother her back.  She says she feels riding in a car is rougher then riding on water.  She sat in the shade most of the time so there was not a problem with being in the sun either.  Hooray!

We had a total of 12 people up this weekend - 6 adults, 6 kids + 2 dogs.  Burt, Dave's cousin, brought his wife Kathy, his kids Sophie & Seth, his friend Jim, Jim's kids James & Lizzie, two other friends whose Dad flew them in by airplane from Chicago (we were impressed).  We had a wonderful time and the weather was beautiful for the lake.  Even though it was in the high 80s, there was a strong wind that made the lake day great.  All of the kids went tubing and so did Jim and Burt.  

Kelly saw the doctor on Thursday prior to the weekend and received ECP also.  Dr. Yanik reduced her steroids down to 4 mgs.  He was concerned about her platelet count being 73 so she is supposed to go in tomorrow for blood draw, clinic and ECP for one day.  He said her left ear also looks like it's retaining fluid.  He mentioned putting tubes in if it doesn't clear up.  He prescribed the Z-pack again and gave her 2 refills.  

Have a lot of pictures to get up of the benefit so put 3 pictures up this week - check them out - Pictures of the Week.

Monday, June 12, 2006 – Hooray!  We were able to go up north this weekend but not without a few obstacles.  On Thursday, Kelly called me at work to ask when we were going to leave for up north, Thurs. night or Friday morning.  I told her it didn’t matter to me so she said, “I don’t have anything to do tonight so let’s go tonight.”  When I arrived home, her back was hurting so she said she wanted to lay down while I was packing.  I decided not to wake but to let her rest so she didn’t wake up until almost 9:00.  She asked, “Why didn’t you wake me up.”  I told her that with our track record and her back I felt it was better for her to just take it easy on her back and that we would go in the morning. 

Her back was still hurting on Friday morning but she says, “We are going.”  She felt that the pain felt the same as when she had a urinary tract infection.  We were driving around 10:30 a.m. north on 23 and I said to Kelly, “Why don’t we stop by the hospital to leave a urine specimen and they can let us know.”  She liked the idea so we took a detour to the hospital.  That only took us maybe 10 minutes.  So then we’re driving north again on 23 and begin to think that one of the meds they will probably prescribed would be one that she was discharged on but has since stopped taking.  If it’s too soon to refill, the pharmacy up north would not be able to fill a prescription called in.  So…around we turn at North Territorial to go back home to get that medicine along with the Enbrel injection that she was to take on Saturday.  We finally made it up north at about 4:00.  Dave was cutting the grass that was a foot tall.  I took over that job while Kelly was busy with her Play Station game that she’s been obsessed with lately. 

We had a nice, relaxing weekend.  We walked the trail at North Higgins Lake State Park that we used to walk with the girls when they were very young.  It was bringing back memories for all of us.  Kelly is determined that every weekend we are up north this summer, we are going to walk the trail.  It’s about four miles long so a really good workout. 

Amy really likes California.  She moves to Riverside this week on Thursday.  She will teach her first class on Saturday.  She’s tired of all the training but 8 hours every day during the week is a lot of training. 

Molly ran the Team in Training Run on June 4^th.  She did really good, except her feet were really sore afterwards.  I'm starting a new feature this week with the hope I can keep it up.  Molly is the first "Picture of the Week."  I'll try my hardest to post a picture a week because we have several good ones from the benefit in April.  Wish me luck!

Tuesday, June 6, 2006 - Kelly was able to come home from Danette’s house on Sunday, May 28^th.  We thank the Morrison’s for taking Kelly in while Dave and I worked on getting well.  Almost every day she was experiencing headaches and complaining that her ear was stuffy.  She has also complained of being extremely tired.  My ears are still stuffy so we just thought it was a part of recuperating from the illness.  The headaches and tiredness we blamed on reduction of steroids.  However, she went to clinic on Thursday, 6/1, and Dr. Choi felt that something is going on with her ear.  Also, upon discharge, they told Kelly to take Zurtec.  Well, the insurance company wouldn’t allow filling of the prescription until she tried Claritin, but Kelly didn’t buy it.  So, Dr. Choi wanted her to begin taking the Claritin and also gave her two Z-packs (usually only one is given) to take for the following 10 days.  Kelly received ECP as scheduled last Thursday and Friday.  Kelly’s headaches have improved but she is still very tired.  We are hoping to begin making weekend trips up north.  Hopefully, Kelly will feel well enough to go with us.  We’ll keep you posted.

Thursday, May 25, 2006 - Now it's catch up time.  Dave and I both sick, we stayed away from visiting Kelly except for 2 times that I went up there - mask over face and keeping my distance.  You know visitation is bad when the doctor calls you at home.  Dr. Yanik called on Sat.  I answered the phone and he asked, "Is your Mom at home?"  I laughed, started coughing and choked out who was on the phone.  He said, "Gosh, I'm thinking of sending Kelly home but I'm just going to send her home to be re-infected."  He said they hit her hard with antibiotics when she first came in and the urine specimen from the emergency room showed an infection with bacteria so he was glad she came in when she did.  He also took her down to 6 mg/day on her steroids.  So on Sunday, we decided to ask my dear sister Danette if Kelly could stay at her house until our house was well.  Of course, she said yes.  On short notice, she then had to go and pick Kelly up, get her prescriptions and get her settled in.  Thank you so much to Danette, Bob, Trevor and Kenzie for letting Kelly hang out at your house this week.  We hope it hasn't been too much of an inconvenience.

However, Monday was Kelly's 26th birthday.  HAPPY BIRTHDAY, KELLY (a/k/a hunnybunny)!!!  It was so hard not to be able to see her on that day.  Danette, along with Trevor and Kenzie,  took her to Mac's for a free dinner on her birthday.  To top that off, Amy left for California on Monday afternoon.  Dave and I couldn't see her off either but she will be back at the end of August (we hope!).  You never know what California can do to a young adult when they've had a chance to live there for a while.  So after many requests from our family members, I called the doctor first thing on Monday and was able to get in to see one of the doctors.  She was a young lady that said she had been sick for 6 weeks with a similar thing.  She was sympathetic though, Kelly's situation probably had something to do with it, and gave me Levaquin, two different cough medicines (pearls & cough syrup with codeine) and Albuterol (an inhaler).  I went back to work for as long as I could.  On Tuesday, I woke up with a terrible headache, so took the antibiotic and cough syrup and went back to bed.  Amy called around 10:30 so I got up to talk with her.  After that it was downhill for me.  I was throwing up and felt terrible!  I called the doctor's office to see if one of the meds I was taking could have caused me to get sick.  The nurses didn't call until the afternoon and when they found out that I was unable to keep anything down all day, they suggested that I go to the emergency room to be evaluated.  So off Dave and I go to the hospital, this time for me.  I thought of Kelly so many times that day with how badly I felt.  I can't imagine how this kid has been doing this for almost 4 years.  Granted, not every day was terribly bad for her but I know she's had numerous bad days.  Anyways, I was able to get in right away.  They hydrated me, gave me 2 breathing treatments, did a chest x-ray (which was normal) and gave me medicine for my headache twice.  Around 8:00 p.m. I was feeling better and they discharged me.  They told me to go home and rest so needless to say, I didn't go to work on Wednesday either.  I did go to work today.  Was rough at first but I made it through.  

I feel the antibiotic has worked to take the infection away and that Kelly can hopefully come home tomorrow.  Dave is beginning to feel better every day although he still can get coughing pretty good every once in a while.  He's now taking the cough syrup with codeine that the ER doctor thought made me sick.  Dave likes it so far.  Says it's really helping.  Kelly had to go back in to clinic on Tuesday.  They found her potassium level was high so she had to go back the next day to get her blood drawn again.  Everything was fine yesterday.  Kelly says she's been really tired these past two days - probably because of the steroid reduction - so she's been sleeping a lot.  .  

Amy is really liking the California job thus far.  Right now she is in a studio apartment by herself in Long Beach.  At the end of the week, all of the trainees will move to an apartment complex that has a pool, fitness area, etc.  She will room with 2 other girls - one from New York and the other from Chattanooga.  Once her training is done in mid-June, she will move to Riverside with the girl from New York.  The other girl is going to Vegas for the summer.  She seems to be really happy and is wondering how to handle all of the phone calling she'll be doing.  We'll have to figure this one out because your cell phone plan only allows so many minutes and we have a lot of minutes but not enough to accommodate someone being on the west coast for 3 months.  .   

Friday, May 19, 2006 - It was so hard not being able to visit Kelly that I asked the doctor if it was okay for me to visit her and wear a mask.  So that's what I did late yesterday afternoon.  I just made sure also that I stayed away from her and then washed my hands all the time.  We had a nice visit and watch The Incredibles.  I'll most likely do the same today.  Dave and I are still hacking away.  The cough just won't go away.  

Yesterday, Dr. Yanik told Kelly that she has a urinary tract infection that is asymptomatic, meaning she presents no symptoms but has the infection.  He also said there is bacteria present so now they are now going to discharge her from the hospital until this is under control.  Kelly is feeling pretty good.  She would just like to be able to get up and walk around the hospital but we know they don't really want her out of the room at all.  She does go to the nutrition room occasionally.  .  

Tuesday, May 16, 2006 - Kelly is in the hospital.  A week from this past Sunday, Dave got an upper respiratory infection.  It fully hit me on Saturday and then we think that Dave relapsed because he started feeling better before beginning to feel worse again.  Yesterday, Kelly started coughing.  She was complaining that her throat was scratchy for a couple of days but the cough is so deep and hard that I was concerned about her hurting her back.  I called the clinic to let them know what was going on Monday morning.  At that time her temperature was 98.  Around 5:00 she started feeling really bad.  We took her temperature and it was 102.  Of course, whenever she run a temperature of 100.5, she has to go into the hospital to be evaluated.  Both the on-call doctor and resident in emergency felt that her counts were good and her chest x-ray didn't show anything so she would probably come home last night.  The attending physical put the kibosh to that.  They admitted her last night.  She's in Mott Hospital on the 7th floor, room 94.  I was/am feeling so bad still that I left as soon as she was settled in her room and I wasn't able to go up there today.  Stayed in bed almost all day.  Dave is still under the weather also but went to the doctor and was given an antibiotic.  My doctor wouldn't give me anything because I have the virus that is going around and lasts about a week.  Dr. Yanik told Kelly that she has a viral bronchitis.  We can't go up there because we don't want to get any of the family members on the floor sick by going to the nutrition room, bathroom, etc.  Hopefully, we'll start feeling better soon.  Kelly is feeling better today.  She finally got rid of the headache she went in with yesterday.  We expect they will keep her until the weekend.  We shall see.  Monday will be Kelly's 26th birthday so hopefully she'll be out by then.

Tuesday, May 9, 2006 – Kelly has been doing fairly well.  She’s had a couple of setbacks with pain in her hip and back.  This past weekend we were headed up north and made it as far as Frankenmuth.  Kelly was in tears in the bathroom with her back so we turned around for home.  Dave and I did a long overdue landscape project in the backyard.  There’s always something to do around a house that’s been pretty much neglected for the past couple of years.  Kelly and I are on to another art project - making stepping stones for our landscaping.  Dave bought enough cement for us to make at least a dozen.  Kelly ended up in bed all weekend long with her back pain.  Prior to this weekend, she had pain in her hips.  She actually went to see Dr. Lee.  He did an x-ray and said there was no change so it was basically the same thing again - rest and up the pain meds.  She has been able to go to ECP almost every week.  I saw Dr. Erba one day when I picked up prescriptions.  He said that it can take a while for the ECP effects to kick in.  Her counts have actually been normal so that's a good thing.

Lots of life changes going on – mid-life for me and Dave, so we are working on making it through.  Amy is headed to Riverside, California for the summer.  She followed up on an e-mail that I forwarded to her a couple months ago.  It’s with the Institute for Reading Development summer program.  They actually provide furnished housing out there.  She seems excited.  Prior to this prospect she was disappointed that she didn’t make it in to Teach for America.  As in the past with all of her school tryouts for sports and music, I told her things happen for a reason and that there is truly something out there waiting just for her.  Lo and behold, she’s off to California on May 24th.  

Kelly's Thank You - 4/12/06

It is truly amazing how much support everyone is able to give and keep giving.  Whether it be donating for a cause, gifts, cards, phone calls, messages, food, physical help, or just being there to listen and visit to show that they care.  I want to thank every single one of you for everything you've done for me and also cancer research.  Thank you for your support, your time, your effort, your cooperation, your friendship, your love.  Ever since I was diagnosed, I have had a tremendous amount of support from each and every one of you, even from people I don’t know that have read about my journey online, in the paper, hear about it through the grapevine, or have even approached me in public places.  It was absolutely wonderful to finally be well enough and able to get out of the house and see all of my friends and family gathered together (not to mention meeting a ton of new people), showing support not only for me, but for a great cause.  You all have been fabulous, and I want each and every one of you to know that it has helped me get through this trying time in my life.  All of your positive support, encouragement, and love I continue to receive day to day keep’s me going and has had a tremendous impact on my recovery.  I can’t thank everyone enough for being a part of saving my life.  Thank you so much for being there. 

I want to give a special thanks to my sister for throwing these benefits the past few years.  You have been an absolute inspiration to me.  Your motivation, talent, encouragement, love and support have been marvelous, and I love you dearly.  Thank you to Shannon, Median, seahorsenapkinforce, and The Silent Years for donating your talent and time for this event.  Thank you to Molly for running in the Team in Training in honor of me and raising money for The Leukemia and Lymphoma Society.  Thank you to all of the businesses that donated prizes for the raffle; Travis Pointe Country Club, Mac's Acadian Restaurant, Sarah McMahon and other stylists at Tricho, Great Harvest Bread Company, Gabriel's Hoagie Shop, Zingerman's, Brian Walline, and everyone who was involved in working for the benefit, handing out fliers, making the fliers, working the door, selling raffle tickets, etc, etc.  Thank you to all my friends and everyone that attended the benefit or donated to the Society.  Your presence at the benefit and in my life is beyond greatly appreciated.  I want to give a very special thanks to all of my family for being so magnificent throughout my life.  Thank you for everything you do.  I can’t even start naming everything, because first, I wouldn’t know where to start, and second, it would be pages upon pages, and people would probably get tired of reading it.  J  Mom and Dad, same goes for you too.  I REALLY don’t know where to start.  I might get all teary eyed and not be able to finish writing.  You have been absolutely, positively, amazing parents.  I really could not have made it through this without you.  You have sacrificed so much for my well-being, and I don’t have any clue how to thank you enough.  There isn’t anything is this world that I can think of that would help me thank you for everything you have done for me and continue to do daily.  Thank you, thank you, THANK YOU.  Thank you times infinity.  Did I say thanks?  J  Each one of you is a blessing in my life.  Thank you everyone, for everything.  I love you all tremendously!  Each and everyday is a blessing.  Don’t take it for granted.  Live, Learn, Laugh, Love.   

Amy's Message - SUCCESS! - 4/10/06

You cannot be thanked enough for all your help with the benefit. Without you, none of this would have been possible.  Saturday was a huge success.  It's truly amazing what can be done when people give their time, talent, energy and cooperation to make things happen.

Here are some numbers that took me by surprise.  This year we exceeded our goal of raising $2,000...we raised $2,279 from the door and the
raffle.  There were also extra donations on the side to make about $2,400.  That's almost $1,000 more than last year.  And the Heidleberg
bouncers tell us that more than 200 people came through that door. What's great is most of these people were family, friends or acquaintances of people we all know.

So...this benefit has raised a total of $4,000 in the past two years. All of which goes to blood cancer research, patient and family services, and cancer awareness.  Not to mention, you passed on a ton of spirit to Kelly and my family.  At this stage in her recovery, she needs all the support she can get.

Hopefully, you not only feel great about this, but are also interested in continuing to help the cause.  If so, familiarize yourself with the American Red Cross blood drives in your area.  You can donate blood several times a year.  In addition you can put yourself on the bone marrow registry.  This is how Kelly's life was saved.  Once you are on the registry you are on for life and if you are a match then one day...you might be called to help save someone's life.

You can get started as early as tomorrow.  See the information below, and/or check out the websites listed for more information. 

Best,
Amy R. Hatfield

http://kellyhatfield.tripod.com
http://www.redcross.org/donate/give/
http://www.leukemia-lymphoma.org/all_chap

Bone Marrow Screening Drive on April 11th

Central Campus Location
Wolverine Room in the Michigan Union
10:00am * 4:00pm

Medical Campus Location
2710 Furstenberg Student Study Center
(Located in Medical Science II Building) 10:30am * 4:00pm

A marrow or blood cell transplant is a potentially life-saving treatment for patients with leukemia, lymphoma, and other blood diseases.  By donating a small sample of blood and you will be added to the National Marrow Donor Program Registry. The Registry is a source of bone marrow donors for those desperately in need of a transplant.

April 10, 2006 - The benefit was a huge success.  We started out with dinner at the Heidelberg.  It was a pleasant surprise when I found out that Chandra, Jason, Alysia, Pam and Rich were coming.  Also attending: Me, Dave, Kelly, Amy, Ruth, Zeljko, Danette, Bob, Trevor, Mackenzie, Jenny, Scott, Molly, Heather and her boyfriend, and Molly's friend.  We ran out of time and missed Shannon singing first at the benefit.  She promises to come over some night to strum and sing at our house.  When we arrived upstairs a little after 10, the place was packed and stayed that way until a little after midnight.  Amy sent out a nice message which I've copied below (maybe not - can't get on the UMICH server right now - I'll do it later).  Anyways, I want to thank each and every one of you that came out to support Molly's Team In Training run with the Leukemia & Lymphoma Society.  I also want to thank all of the businesses that donated misc. items to raffle off during the night.  Travis Pointe Country Club donated golf for 4 and dinner, Mac's Acadian Restaurant, Sarah McMahon (my hair stylist at Tricho) rounded up four stylists that gave certificates for free haircuts and blow dries, Great Harvest Bread Company, Gabriel's Hoagie Shop, Zingerman's, Brian Walline for the t-shirt creations and everyone that helped sell the raffle tickets and collect the cover charge at the door.  We raised approx. $2500.  AWESOME!

On Sunday, it was recovery.  My toes hurt from wearing heels and being on my feet all night long.  Kelly was also wearing a short heell, which we think may have caused her to walk differently.  When she woke up, she was having excruciating pain in her knees.  She took her pain meds, I made up some ice packs and she moved back upstairs cause it's nicer as far as laying around all day and she felt much better this morning.  I'm a little concerned that her back is still bothering her and she's also complaining about her hips.  She mentioned it last week when she called the clinic for prescriptions but they said to contact Orthopedics if it continues.  And we know what they are going to do - nothing, unfortunately.  They'll take an x-ray and tell her to rest and increase the pain meds.  Sad but true.  Bone pain is just a part of all this long-term steroid treatment and the weaning process.  

Amy's message mentions a bone marrow drive that takes tomorrow at U/M campus.  If you are able to do this, it is a great way to help support blood cancers.  I hope I can get to my E-mail later so I can post the information.  

By the way, if anyone ever saved the journal from 2003-2004, please let me know.  I would like to get a copy of it.  Turns out I am missing  portions of the journal.  I've E-mailed Tripod to see if they can give me the backup but haven't heard from them.  Just send an E-mail to  webdzins@yahoo.com if you can give me any of this information.  I would really appreciate it.  I realize what I did.  When I went in to update the journal week before last, I thought that the website was saving blank pages as I went in to update (I've had a lot on my mind lately).  I noticed a Page 1, 2 & 3 with no name so I deleted the pages without checking them before.  So...I'm still upset about it but not quite as bad since Dave was able to get that old file.  Thank goodness not all was lost!  In December Kelly was in the hospital all but one week (mid-week).  They sent us home so we could enjoy Christmas.  We were back in the next day because she spiked a fever.  The funny thing that I remember is that they put her in the very same room.  The nurses, techs and cleaning crew  would come in and say, I thought you went home yesterday.  If I remember correctly, we were out in time to spend New Year's Eve at home.  Kelly thinks I'm missing quite a bit of the journal so if anyone could help, you'll be a hero.

Thanks again to everyone for the tremendous support!  

April 6, 2006 - I had a major panic attack today.  I noticed while looking at Kelly's website today that the journals for 2003 and 2004 were not linked.  I had somehow deleted them.  Oh NO!  Luckily, Dave found them on a very old laptop.  Thank goodness!  Kelly is doing fine.  She went with Danette and her family to Boyne Mountain's Avalanche Bay.  She had a great time.  She is complaining today about her back hurting.  It was hurting her before she went but I think it's progressively gotten worse.  She even called the clinic today about it.  Her blood pressure seems to be going up some also.  Hopefully, it's nothing to worry about.  

We are gearing up for the benefit this weekend.  We have several donations from companies that we are going to raffle off.  I will post the company names next week.  Come on out if you can.

Wednesday, March 29, 2006 - Kelly is still doing great!  She just returned from the ophthalmologist though and was told she is developing cataracts because of long-term steroid use.  He said it will probably get worse in the next 2 months and she will probably need surgery but then it should be okay.  Her last OT and PT appointments were last week.  She promises to keep up the activity level and building of muscles.  

As she did last year, Amy is holding a benefit at the Heidelberg on Saturday, April 8, 2006, beginning at 9:30.  The money raised will go to Molly Hannula for her Team in Training goal.  Amy has received donations from several companies that she plans to raffle off.  She is also having a 50/50 raffle.  Should be fun.  Check out the flyer by clicking here.

Sunday, March 18, 2006 - Last Friday, 3/10, Kelly had a Neostar put in where her Hickman port used to be in her chest.  She had a blood clot in one of the lines, and another reason for the change is that the lines on the Neostar are larger so that will make her ECP treatment go a lot faster.  She'll be able to do more cycles of ECP, which is a good thing.  But, of course, Dave and I go through the anxiety of hoping she doesn't get an infection because of the change.  She has been so lucky with her Hickmans.  Many patients develop infections and need to have them removed.  She takes good care of her site so hopefully no infections will surface.

Dave and Kelly are attending a class this weekend learning how to build guitars.  They brought them home last night and they are really cool.  They really like the class.  Now they need to learn how to play them and maybe they can one day play at the benefit.  

Speaking of benefit, Amy is gearing up to contact companies for donations.  Lindsey, a friend of Kelly's, was able to obtain a raffle donation from a tanning salon.  Thank you once again, Lindsey.  So we are looking forward to the benefit on April 8th.  We are confident it will be a huge success.  

Kelly continues to feel good.  Her mouth sores have gotten better - not all the way gone but better.  Last night she was showing me how she can bend at her waste now.  She's getting stronger and stronger.  Occupational therapy is working with her on getting back to driving.  She'll have to take a test since she has drove for the past year and a half. They took her steroids down to 12 mg a day from 18 mg a day.  They're trying to go slower this time.  Hope and pray GVHD doesn't raise it's head again.  

Wednesday, March 8, 2006 – Kelly’s one-year anniversary of her transplant was Friday, March 3^rd.  We had a celebration at our house on Saturday with family and friends.  It was very nice.  Jason and Chandra told us about Comcast On Demand having karaoke on it so we checked it out.  Needless to say, there were many people singing all at the same time.  It was fun.  No American Idol members in that group. 

Speaking of American Idol, we had some fun with my niece and nephews imitating the judges – Paula, Randy & Simon.   Someone would sing and the kids would provide constructive criticism.  Those kids really have the judges down as far as what they always say and gestures they make.   It was hilarious. 

Kelly has been called twice for ECP when patients have cancelled, which is good because Dr. Yanik said he wanted to try to get her in every week.  She has been feeling really great.  She has loads of energy.  She dyed her hair a very dark red and it looks good. 

Kelly is very excited about an article that Danette pointed out to her in the Saline Reporter.  Margie Bovee is opening “Two Twelve Arts Center” in Saline soon.  You can read the article at http://salinereporter.com/stories/022306/loc_20060223005.shtml.  Margie was the reporter that wrote the article about Amy running in honor of Kelly for the Team in Training marathon last year.  Kelly thought she would give her a call to see if she could volunteer to help.  Margie was so excited to hear from her and to find out that Kelly loves art and has several pieces  that she wanted to meet with her and Amy.  They met for 2 hours on Monday, 3/6.  Margie wants Kelly to put up an exhibit of her art work.  She also wants both Kelly and Amy to teach a class.  Kelly is suppose to teach a drawing class.  I don’t know what Amy is planning to teach.  This made Kelly so motivated that she’s been painting or drawing ever since.  Kelly is overjoyed about all of this and feels it was just meant to be.  So we’ll keep you updated about this.  Danette and Kelly went to Kohl's spectacular sale a couple days ago and bought a lot of frames at a good price to use to display some of her work.

Amy is planning another benefit like the one she did last year at the Heidelburg in Ann Arbor on April 8^th.  She plans to donate the money to Molly Hannula for her Leukemia & Lymphoma Team in Training run.  I believe right now she has 3 bands willing to play.  Kelly and Amy are coming up with a list of popular songs that they want the band to choose one and perform it at the benefit.  Older songs, Madonna, etc.  We plan to ask local businesses to donate gift cards or items that we can raffle off that night.  If anyone knows of a company that you think might be willing to donate, please let us know.    

Sunday, February 26, 2006 - Ruth and Danette came over Friday night to bring us dinner.  Ruth said that Zeljko wanted to let me know that my counting of the days were not far off because there are 365 days in a year (duh!).  What was I thinking?   I just know that next Friday is March 3 and is the one year anniversary of Kelly's stem cell transplant.  We plan to have a small celebration at our house on Saturday.  

Kelly's energy and appetite have continued this week.  She finally received the Enbrel authorization so she will take injections on Wednesdays and Saturdays.  The Enbrel is for GVHD.  Her biggest problem is the GVHD in her mouth.  Last night her tongue looked milky and she keeps getting these clear blisters (sometimes red) in her mouth that she wants to pop.  She's learned that basically every time she eats she needs to brush her teeth.  

Wednesday, February 22, 2006 -  I just realized my counting of the days is obviously wrong because five days added to the last entry would have been an anniversary for the 1-year stem cell transplant and that is not until March 3rd.  So I will stop counting the days.  Yes, the one year anniversary is fast approaching.  It's been a long year.  

Kelly has continued to feel good and be full of energy this week, with the exception of Sunday.  She took it easy that day.  She had to be at clinic on Monday morning.  Most of her blood counts held in the normal range without the help of Neupagin so we are very happy.  She was suppose to get 2 injections of Enbrel each week but the doctors are going through that insurance authorization ordeal.  She received a call today that they had an opening at ECP so she will go for treatment tomorrow and Friday.  Dr. Yanik said he was going to try to get her in every week and he did it!  He's great!  

While Dave has been in Florida, Ruth and Danette have been helping out this week with getting Kelly back and forth to physical and occupational therapy, also doing some shopping together.  Thank goodness for sisters.  Mine are wonderful!

Friday, February 17, 2006 (Day 349) - Kelly is home, thank goodness.  We arrived home around 6 p.m.  She said she feels like running so she came home and walked on the treadmill.  She has a lot of energy.  We just have to make sure she keeps eating and taking her medications right.  That is so hard with her being the age that she is because we pretty much rely on her to do what she's suppose to do but I think we are learning we have to monitor and encourage her more.  They were going to send her home on iv nutrition but she went over with Dr. Chao what she ate today and she felt home nutrition wasn't necessary.  At least we know now that if she stops eating, we can tell the doctors she needs home iv nutrition.  

They took her steroid dosage down to 16 mg twice/day; down from 32 mgs twice/day.  Her skin is looking better but the red blotches turned into what looks like bruises when she has her brace on.  It's really weird.  She looked at her legs one day while showering and said, "Mom, look at me.  I look like my legs have been beaten up."  The doctors say it takes a long time for them to go away.  She is now on 50 mgs of cyclosporine twice/day.  Prior to going into the hospital she was taking 125 mg twice/day.  Her counts have been way up so that's why they decreased the dosage.  She received ECP yesterday and today.  They want her to go to clinic on Monday at 8:30.  They sent her home with a bunch of new medications that we have to still sort through tonight.  We are just glad to be at home sweet home.

Dave and Amy are off to Chicago to visit Burt and his family for a couple of days.  On Sunday, Dave, Burt and his family fly to Florida for a boat show in Miami.  Amy is going to house and dog for them until Wednesday.  This will also give Amy a chance to, hopefully, make some contacts with schools because she wants to go to Chicago to teach.  She had to submit her application to Teach for America today so I was helping her with her essays.  If they offer her a position, hopefully, she'll be placed in Chicago.  Sometimes, you are not placed where you want to go.  First step is to be offered a position so we'll wait to see what happens.

Friday, February 10, 2006 (Day 342) - It’s been 6 days but it doesn’t seem like it’s been that long to finally learn that Kelly has GVHD of the upper and lower intestine.  Dr. Yanik plans to increase her steroid dose to 16 mgs twice a day for a total of 32 mgs.  She was only taking 6 mgs/day.  He decided to increase her steroid dose slowly rather then start out at a high dosage and then go down because of the rash she has on her skin.  They determined that the rash is not chicken pox and that it is not GVHD.  They won’t know until Monday if the rash is due to a viral infection.  The rash on her skin could get worse with the steroid increase if it is due to a viral infection.  Her skin actually looks better today so we are hoping it continues to improve.   

Dave just called to say she had a reaction to the IVIG infusion they are giving her tonight.  She has had this reaction before when receiving it in clinic so Kelly warned the day nurse about it.  They infused it at a slower rate but it still caused her to have discomfort so they slowed it down further.  She had cramping in her back and tightening in her chest.  This reminds me of platelet infusions she received when she was first diagnosed with ALL.  

I wanted to note the antibiotics she was on prior to Dr. Yanik taking her off of them:  Cefepime, Vancomycin, Tobramycin.  This is in case she is given them in the future so we are aware of any allergic reactions.   

Kelly is very scared, as are we.  This evening she actually told Dr. Yanik she is scared.  He told her that he is going to get her feeling better.  I hope and pray that this happens soon and that she is home soon. 

Thursday, February 09, 2006 (Day 341) –  The doctors and pain management team were finally able to get Kelly comfortable on Monday.  Due to the amount of pain medication that she is used to taking, the weekend doctor did not have her taking anywhere near the right amount of pain meds even though he was well aware of what she was taking.  She has not been able to eat or drink at the request of Dr. Yanik.  The are feeding her intravenously.   Because of constant pain in her stomach and nausea, Kelly has up to 3 nausea medications that she can get around the clock and she’s been asking for them.  She has not had a vomiting spell since Tuesday but even then she was unable to get anything up because she’s not eating anything.  Dr. Yanik at first wanted to check her for infection and everything has been coming back negative.  He’s still pumping in the antibiotics though.  Kelly started developing red blotches all over her body Wednesday afternoon.  Dr. Yanik thinks it’s probably a reaction from a drug but it’s hard to determine which one because she is getting so many so he’s switching up some of her medications.

 Yesterday afternoon she had an endoscopy and colonoscopy to check for GVHD of the upper and lower intestines.  The upper intestine looked fine but the lower intestine was red and inflamed.  Dr. Yanik said that they saw the inflammation and redness going into her lower intestine and two feet up.  I told him it was upsetting to me that they didn’t do the scopes sooner but he said they might not have been there then.  He said that GVHD is like a forest fire – it smolders and then all of a sudden catches fire.  He is hopeful that Kelly will be feeling better by the weekend.  He’s increasing her steroids up to 50 mg for just a few days to get control of the GVHD.  He doesn’t want her on the high dosage for a long time because of her compression fractures so he plans to take her back down after a few days and start her on Enbrel, which helps GVHD also.  He also wants to try to get her an added treatment of ECP.  

Monday, February 6, 2006 (Day 338) - Kelly is in Mott Children's Hospital.  On Saturday, she slept most of the day.  I was thinking she was dragged out from the ECP as usual.  I would try to arouse her every few hours to eat and take her medicine but was unable to do so.  I didn't want her taking her medicine on an empty stomach so since I couldn't get her to eat, I didn't force the taking of pills.  Around 5:00 she finally woke up and ate a piece of toast and drank a Boost.  She took Ativan for nausea before she even tried to take in food.  Not too long after doing that she began to vomit and she couldn't quit.  Around 9:00 she told me that she wanted to go to the hospital because she felt that something was wrong.  So into ER we go at about 10:15 p.m.  She was rolling back and forth in the bed in so much pain with her stomach.  Thankfully, the nurse got the physician assistant to come in right away to start ordering nausea and pain medications.  It took a lot to finally get her comfortable.  They did cultures on all of her Hickman lines and x-rays of her stomach.  Of course, the decision was made to admit her.  We finally made it up to Moderate Care on floor 5 of Mott at about 7:30 a.m.  Her potassium level was very low and she had missed all of her medications on Saturday so they wanted constant nurse attention to begin pumping in the meds.  Dr. Yanik stopped by and wanted her moved to floor 7 because we were in a room with 2 other children and one lady was coughing and blowing her nose so he wanted her out of there.  Kelly is now on the 7th floor in room 7729 (I think) and in isolation.  This may be in part because Kelly was exposed to chicken pox last Sunday when she went to her girlfriend Stacie's baby shower.  Stacie, two days after the shower, came down with chicken pox.  The BMT doctors do not seem concerned about the chicken pox because Kelly had them as a child and she still has that immunity in her body.  If they are going to "wake up" (as Dr. Yanik said), they will just do that not because of exposure.  

It's been a really rough stay this time.  Even today Kelly continues to have nausea and vomiting and she even tested positive for blood in her stool, which is a first.  The pain management team thinks she may be experiencing the nausea and vomiting due to going through withdrawals from the daily pain meds she takes due to missing all of them in the past 2 days.  They are finally bumping up her pain medication to be continuous and as needed with a pump that she can push if she feels she needs it.  They will continue to monitor her..  Since Kelly continues to run a temperature of 100.7, Dr. Yanik wants to rule out infection before the gastrointestinal doctors begin their tests, which would be an endoscopy and colonoscopy.  

Kelly is very scared and so are we.  We just want to get her comfortable and to the bottom of all this stomach discomfort.  We have been waiting way too long for the gastro team to see her and we expressed this to the doctor (a fellow that will come back later today with the attending doctor and resident) that stopped by this morning to see Kelly.  It sometimes gets very frustrating not seeing the "real" doctors when your child is suffering but I guess it's better to have a lot of people thinking about her then just having one.  We sure have a lot of people thinking about her.  Please, everyone, keep up those prayers and hopes for Kelly to make it through all of this.

Saturday, January 21, 2006 (Day 322) - I decided to split the journal pages up since it seemed to be taking a long time for the journal to come in.  I hope it's not too confusing.  Please let me know by signing  the guestbook if you think I can improve on the navigation.  

Kelly had her next ECP treatment this past Thursday and Friday.  They were actually able to do 5 cycles on Friday, which up until yesterday they were only doing 3 cycles.  They can go up to 6 cycles.  She saw Dr. Choi on Thursday prior to the treatment.  Her counts are holding steady.  They were happy with the way she looked in general and also with the look of her skin.  They were not happy that the gastro clinic appointment was so far away - Feb. 3rd - but Kelly seems to be doing better with controlling the nausea and with eating (the dr. noted she gained back a few pounds), even though she had a vomiting spell last Sunday night.  They are going to see about getting her into the gastro clinic sooner.  As directed by Dr. Choi during the previous clinic appointment, Kelly took her steroid level down to 6 mgs last Thursdays (1/13) and no GVHD appeared so that's good.  She is having GVHD (sores & discomfort) in her mouth but they didn't seem worried about it. They plan to take her steroids down again in 2 weeks.   

Kelly saw Dr. Williams (her internal medicine doctor) recently.  We were wondering why we were going to see him so we came up getting the bone scan and MRI results, but whenever Kelly  sees Dr. Williams he always comes up with questions or offers advice that makes us glad we made the trip.  This visit was no exception.  He sat Kelly down beside him while he brought up her test results for the MRI and the bone scan.  He explains everything reported on the tests, which is very helpful.  The MRI showed that she had an acute compression fracture on T9, which was new, and it also confirmed the previous fractures that occurred.  In Dr. La Marka's defense, I did E-mail him previous to this visit to ask for the results and he E-mailed me back the results so that was appreciated as well.  The bone scan showed Kelly having osteopenia in several places, which is better then osteoporosis even though most doctors say she still has osteoporosis.  She asked Dr. Williams if there was something that could be done to reverse the damage and he felt that it was possible.  He mentioned calcium and also being on the birth control pill for estrogen.  So this is the item we need to talk about with the BMT doctors.  

Once again this year we have someone running in Kelly's honor at the Leukemia & Lymphoma Society Team in Training marathon  in San Diego.  Molly Hannula is a good friend of Kelly's.  She moved to California in January 2005.   Kelly really misses her because she used to visit often and just chill for hours at our house.  Kelly actually had plans to move to California with Molly last year but the relapse changed those plans.  So Molly went ahead and moved by herself to attend the California Art Institute in Santa Monica, which they had planned to attend together.  Kelly's goal is to eventually make it out there once she is fully recovered from the bone marrow transplant.  So, if you can spare a few dollars and would like to support Molly's Team in Training run, please visit https://www.active.com/donations/fundraise_public.cfm?key=molly4kelly.  Every little bit helps.  We wish you the best of luck, Molly, with raising money and with the run.  Get to training, girl.  

Monday, January 09, 2006 (Day 310) – Kelly went to her next treatment of photopheresis this past Thursday.  At the end of the day, she had to go back up to the BMT infusion to get the pamidronate.  This is supposed to help strengthen her bones and she’s been getting it every 3 months since July.  On Tuesday, prior to Kelly’s clinic visit I called Maria to tell her of Kelly’s vomiting episode this past Sunday.  It was all day.  She couldn’t eat anything.  We were so scared this was going to hurt her back but luckily she turns over on her stomach and hangs her head off the side of the bed.  I was on the edge of calling the on-call doctor that night but she was not running a fever and her sugar level was holding in the nineties and not taking a dive.  They decided to have Kelly come in to have her blood drawn on Wednesday to see if she was anemic.  On Thursday they reported that she was not anemic and she was still getting the ECP treatment but she has lost 10 pounds in the last month.  They are going to contact the gastrointestinal doctors to set up an endoscopy so they can see if she has GVHD in the intestines again, and if not, what they can suggest to help relieve this problem.  At least they are doing something about it.  She has this nausea problem all the time.  It’s been a vicious cycle.  Nauseated, take an ativan, sleep for 3-4 hours. 

Wednesday, December 28, 2005 (Day 300) – The weekend after the last entry things began taking a downward slope.  Kelly believes she hurt her back on Friday, 12/9, while getting into Dave’s truck for an appointment.  She was down in bed for another 2 weeks – compression fracture of the spine most likely.  She was in a lot of pain, which caused me to E-mail the neurology doctor, Dr. LaMarka, and I cc’d Dr. Yanik and Deb of the BMT team.  Dr. La Marka was very responsive and even cc’d Dr. Lee who is Kelly’s orthopedic surgeon.  I could not find Dr. Lee’s E-mail address or I would have included him on the E-mail.  I was basically asking for an MRI of Kelly’s entire spine since this is what the doctor at Beaumont said he needed in order to see the compression fractures to be able to positively identify a diagnosis.  Compression fractures are, apparently, very hard to see.  Since Kelly was seeing Dr. Thompson about the cavernous angioma, Dr. LaMarka ordered an x-ray of Kelly’s spine to be taken before being seen for her appointment.  The resident doctor and Dr. Thompson were very nice during the appointment and were very expressive to what we were going through.  Dr. Thompson’s words had us both in tears.  I have never met a doctor that touched me with his words the way he did.  But maybe I was vulnerable to all of this because of all the pain I saw Kelly go through in the past days.  Good news!  The angioma was nothing to worry about and they did not feel there was a need to even follow up.  

Dr. LaMarka’s assistant, Michelle, came to see us after Dr. Thompson to say that Dr. LaMarka took a look at the first x-rays and there was no change.  He wanted to get another x-ray because they didn’t go high enough with the first set of x-rays.  Dr. La Marka had to leave to catch a plane and that’s why we did not see him.  

It must be noted that Dr. Lee responded to the cc’d E-mail at 2:30 a.m. and he also called me at around 10:30 in the morning to discuss Kelly’s new pain development.  He said that he has treated many cancer patients with the same problem as Kelly and there is not much that can be done beyond the TSLO brace and pain medications.  He said that he would not order an MRI at this time because he did not think it would provide any information that would change his diagnosis.  He said that he is open to seeing Kelly at any time if she feels she has new findings and would even see her before or after during normal clinic hours, if necessary.  I appreciated his phone call very much. 

 Dr. LaMarka was able to schedule Kelly an MRI, which we went to at 6:30 a.m. on Monday, December 26, 2005.  This time it was of the entire spine.  We are anxious to see the results.  Of course, his assistant during our visit to the office was suggesting that Kelly may need the surgery that puts a plastic materials between the vertebrae to stop the occurrence of compression fractures but this would be determined after seeing the MRI results.  So, we will see what happens.  My first questions is…if the surgery is needed, does the BMT team agree? 

We saw Dr. Yanik in the hall during our visit on Thursday, December 22^nd, to the BMT clinic.  He asked how Kelly was doing and did say to keep him in the loop with the E-mails about her back.   He did respond to me and said that he hopes an MRI was scheduled soon.

During the clinic visit, Deb mentioned the E-mail correspondence as a way to keep her informed but she never did respond to let me know anything.  But this is not their area of expertise so I just wanted to let them know what was going on in case this was something they could help with.  Kelly was seen by Dr. Levine in clinic.  He feels that Kelly’s skin appearance is so good that he stated that in 3 weeks they will go down 4 mg on the steroids per day.   He saw no reason to do it on that day since she was scheduled for the photopheresis treatment in the afternoon.  He’s assured that in 3 weeks after the ECP treatment weaning of the steroids will produce a positive result – no GVHD showing it’s ugly head! 

Kelly’s photopheresis treatment started on Thursday, Dec. 22^nd, at 1:00 p.m. and she was scheduled for Friday, Dec. 23^rd, for the 2^nd treatment.  Luckily, I was able to take off work even though we were knee deep in applications to our Ph.D. program but Lesley was very supportive of my being with Kelly during these first 2 treatments.  I am so fortunate with my work situation and thankful for Lesley being so understanding.  The first day the nurses allowed me in the room to explain the procedure.  After this, I am only able to come in to say hello and see if she needs anything so basically it’s a dropoff and pickup type of procedure.  It takes anywhere from 4-6 hours.  The following is taken from a brochure that was given to us prior to the start of the treatment and also given to us at the first treatment appointment.

Photopheresis is a process that separates out some of the white blood cells (WBC) from the rest of the blood and exposes them to ultraviolet light after adding a drug, UVADEX (methoxsalin).  When exposed to ultraviolet A (UVA) light, the drug becomes activated, which then destroys diseased white blood cells. 

There are several possible theories on the way photopheresis works.  One theory is that when the treated white cells are returned to the body, the immune system senses a difference and the body works to eliminate these cells and others like them.  It is used to help GVHD and many other diseases, especially T-Cell Lymphoma. 

During the photopheresis process, blood is removed, just like when taking a blood test.  The blood goes into a machine that separates the blood cells.  Everything is returned to the patient immediately, except for the white blood cells, which are treated with UVADEX and then moved through a light panel so that the UVA light can reach them.  After the light therapy, the white blood cells are returned to the patient. 

Kelly will be getting the treatment every two weeks, two consecutive days, for the next 6 months.  After that, she may just have to go once per month for up to a year. 

Kelly has been extremely tired since having the treatment.  There are two other patients getting ECP at the same time as Kelly.  One young man told Kelly that he felt really tired after getting his first treatments.  The nurse and I both said that everyone is so different with treatments but what he said held true for Kelly – very, very tired.

They told Kelly that she needs to protect her eyes from ultraviolet rays 24 hours after treatment so she went and bought a pair of Rayban sunglasses – very nice.  She is supposed to avoid sunlight for a day and protect any exposed skin with sun block. 

Even with all of the fatigue. We were able to enjoy Christmas Eve at Danette’s house.  Since Audrey is still recovering from back surgery, there was no “Hatfield” gathering this year.  Today, Kelly slept almost all day and is just now beginning to wake up – it’s 6:00 p.m.  Her next clinic visit is Thursday, Jan. 5^th, at which time she gets her next 2 days of ECP.  We hope and pray that this works to get rid of the GVHD so she can get off the steroids. 

We hope everyone is having a wonderful holiday season!

Friday, December 9, 2005 (Day 281) - Apologies, once again, for the delayed journal entry but things have been going relatively well for the past month.  Kelly has been going to the clinic every two weeks now.  Her counts have been pretty good.  Platelets this past Tuesday were 138 but her white blood cell count and ANC were low so they wanted her to take 2 neupagin shots.  The ECP procedure will not happen now that the holidays are upon us.  She went back to see Dr. LeMarka about her compression fracture problems and tingling.  Basically, we heard the same things.  She goes to see another neurologist on the 20th for the cavenous angioma that they discovered in an MRI.  She is moving about very well.  We've done all day or 12 hour days of shopping or doing something.  She pays the next day by sleeping almost all day long. 

We had Thanksgiving Dinner at my Mom and Dad's house.  It was delicious!  We took leftovers with us up north on Friday.  There was a foot of snow of up so it made it very easy to hibernate in the cabin all weekend.  Kelly was able to catch up on sleep up there also.  She took all of her bead supplies, which sparked my interest in the hobby.  Now every chance we get (which is not much these days) we sit down and bead. 

Happy Birthday to Mom a/k/a Audrey a/k/a Grandma.  Hope you had a wonderful birthday and you continue to feel lots better after the back surgery.  

Wednesday, November 16, 2005 (Day 258)  - Kelly doesn't go back to clinic until next Monday but that doesn't mean that we haven't had our problems.  This past Thursday, Dave calls me at work breathing hard, frantic saying that Kelly was in pain with her back.  He had put her brace on and she sat up in her hospital bed.  She then felt nauseous, heaved and let out a big scream that scared Dave to death.  Her back cracked in the lower area.  This is what caused the frantic call to me.  Dave hung up with me so they could evaluate the situation.  When talking to Dave and Kelly again from work, which is sad, but we decided if she was basically okay that a call to the BMT or orthopedic doctors would not produce anything.  The BMT clinic would tell us to call orthopedic doctors and they would order an x-ray.  Based on our past experiences, they would not be able to see anything in the x-ray and tell Kelly to keep up her pain medication and go home.  Kelly, being the tough girl, patient, woman that she is just dealt with it and even went to physical and occupational therapy on Friday.  

Saturday was the family celebration of Amy's birthday (Kelly's sister turned 23 this past Monday).  Kelly, Danette and I started out at the Saline Art Fair at 1:30.  Amy met us at around 2:30.  We had fun and bought lots of stuff - ornaments, jewelry, hats, etc.  Then we went downtown Saline to have a coffee at Sweetwater then we went to a gift shop next door.  After that we met Dave, my Mom and Ruth at Mac's.  Dave was already there and talking to Wally, our next door neighbor who owns the restaurant.  It was extremely nice of him to give birthday dinners to both Amy and Kelly.  After Mac's we went shopping at Briarwood for Amy some stylish boots as her birthday gift and then to Kohls.  Kelly and I did not get home until 11:15 p.m.  Needless to say, Sunday was a rest day for both of us but especially for Kelly.  I think she must have slept at least 8 hours during the day.  We decided it was going to be a "vegging day," which I thoroughly enjoyed even though she was sleeping most of the time.  

This week she has still been dealing with her back pain.  Finds it difficult to roll on the bed, which has been her method of moving in the bed.  Today she has been up in her brace almost all day so I have to go downstairs right now to check on her and get her into bed.  As I've said so many times before, she is a real trooper.  

Tuesday, November 8, 2995 (Day 250) - Kelly visited clinic last Tuesday and today.   They increased her cyclosporine last week and this week so now she is up to 150 mg.  This is the medicine that works against the graft vs. host disease (GVHD) along with the steroids.  Other then that, they made no other changes to her medications.  Kelly is getting stronger day by day and her hair is getting thicker and filling in all over her head.  She was quite worried about several sections of her head not filling in but I kept on telling her it would fill in and it has!  They told her at clinic today that she is next in line for the ECP procedure.  This is also called photopheresis.  Here is a link to read more about it - http://www.regence.com/trgmedpol/medicine/med84.html.  She will have two days in a row of treatment that lasts about 4 hours each day and then go back in two weeks.  They withdraw her blood.  The lymphocytes are collected by pheresis and exposed to UV-A light and then they are infused back into her.  This is suppose to help with the GVHD and also make her feel better.  Dr. Choi said that it may take a while before Kelly will actually begin to feel better.  This is great news though.  Kelly looks really good.  She has far less petechiae - the bruise spots on her legs have cleared up and they used to be really bad.  She's going to physical and occupational therapy 3 times a week now but that may end soon because they are saying that she's getting to her limit.  We'll have to figure that out with the insurance people, which is always a hassle but we are so very thankful for what we have.  We've been walking quite a bit lately because of the nice weather so that's good.  But Sunday with the wind was another story.  I didn't want to be a party pooper so I agreed to go for the walk.  Usually I'm a wimp in the cold weather.  We started out bundled up like it was winter and thought we were overdressed but found out different once the heavy wind started blowing in our face.  We were glad to get home that day.

Thursday, October 27, 2005 (Day 238) - Came home from work and Kelly wanted to take a walk outside even though it was a little nippy.  That's okay.  I just layer on the clothes and off we go walking for an hour in the neighborhood.  Then I find out that she had already walked an hour in the house going around in circles.  SO 2 hours of walking today - GREAT!  She's working so hard to beat this thing.  

Wednesday, October 26, 2005 (Day 237) – Kelly ended up going back to clinic on Tuesday, 10/18, and saw Dr. Yanik.  He decided to decrease her steroids to 8 mgs on Monday, Wednesday and Friday.  He also decreased her insulin to 25 cc and her pain medication down 20 mg from what she is currently taking.  She was suppose to drink magnesium citrate every day last week to help with her FOS (full of stool) situation.  He basically told her that because of everything he wants her to cut back on she would be feeling pretty crappy.  He was right.  She didn’t feel well at all this weekend.  Plus she had signs of the graft vs. host disease coming back on her skin.  So she called the clinic on Monday and I took her in.  They said that they now know that they have to wean her slower from the steroids now that they see the GVHD of the skin is resurfacing.  So she’s back on 8 mg/day and will go back to clinic next Tuesday.  They are anxious to get her off the steroids so her back can heal.  Dr. Choi said she doesn’t know where she is on the ECG waitlist but she must be getting close.  This is the procedure where they “cleanse” the blood cells.  Since this subject seems to be coming up a lot lately, hopefully, Kelly will be able to get it soon. 

The neurosurgery clinic called Kelly yesterday canceling the appointment she had with Dr. Gartin because she was double booked and scheduled to see Dr. LaMarka in November.  This was a disappointment because we liked Dr. Gartin very much.  He was the one that saw Kelly in the hospital when they discovered the cavernous angioma and this was the follow-up MRI and appointment.  So I called to speak to the person that left the message of the double booking.  She said that Dr. Cooke (a BMT doctor) had called and talked to Dr. LaMarka about Kelly’s compression fractures and the tingling and that Dr. Gartin made the decision to have Kelly see Dr. LaMarka instead of him.  Dr. LaMarka is an adult neurosurgeon and Dr. Gartin is a pediatric neurosurgeon.  I asked her about the results of the MRI and, thankfully, there has been no change with the angioma.  So we agreed to make the switch to Dr. LaMarka in November since Dr. Cooke had talked to him about her back. 

I’m happy to report that this morning when Kelly woke up, the graft vs. host of her skin looks like it’s gone.  What a difference one steroid pill makes.  We are so glad because if it didn’t go away by Friday she was supposed to go back to clinic.  They probably would have increased her steroids more, which we don’t want to happen. 

Friday, October 14, 2005 (Day 225) - A quick update on clinic yesterday.  They are backing her off of the pyridium.  She received the IVIG and bone strengthening infusions.  Her platelets were 56 but her white count was down still.  She will go back to clinic next Thursday.  She has an MRI tonight on her head to check the status of the spot they found in her head that hemorrhaged.  I am sure things will be okay.  She's a little down today.  I think she misses socializing with her friends.  It's Friday night and she's thinking about her friends going out and having a good time and she's stuck here with me - getting an MRI.  Things will get better and she'll be able to join her friends soon.  

Thursday, October 13, 2005 (Day 224) – Wow, I haven’t updated in a long time.  I hope I can remember everything.  Kelly’s counts have been improving and holding steady.  So much so that she hasn’t needed platelets.  This is great news!  She is happy with the brace that was formed to her body.  She’s amazed that she actually has room to breathe.  She still has the problem of her limbs turning purple when she has the brace on.  This probably has something to do with circulation when she has the brace on. 

The last time Kelly went to clinic, which was Monday, 10/3, they told her she didn’t have to return until today.  We were quite surprised.  We get to go 10 days before getting another blood draw or being seen in clinic.  Things are definitely getting better.  We received a telephone number at clinic for Dr. Montgomery who is an orthopedic doctor that works out of Beaumont Hospital.  We saw him in Royal Oak at 7:15 a.m. this past Monday (10/10).  We had to get up bright and early to make it to Royal Oak by that time.  They took several x-rays but only had written reports for the x-rays and various procedures that were done at U/M.  It would have been nice if we would have taken x-rays for him to actually compare his to.  Oh well.  He feels that the U/M orthopedic doctors have been correct in that Kelly needs to regain her strength and attempt to get out of the brace because he could not see any fractures.  He does want another MRI that would be done at his facility though.  He said the best way to see compression fractures in the spine is with an MRI.  We decided that since Kelly’s internal medicine doctor (Brent Williams) would have to give her a referral to get another MRI that she should make an appointment with him to see if he can offer any explanations as to why she continues to have so much bone pain and also to address her bathroom problems.  She will see Dr. Williams next Thurs, 10/20. 

On Tuesday, 10/13, Kelly called the BMT team concerning some bathroom difficulties she has been experiencing.  They told her to go to the emergency room because that is the fastest way to get her an MRI of the spine to make sure she doesn’t have any spinal cord damage.  Dave and Kelly arrived at 2:00 p.m. and Kelly and I left the hospital at 4:00 a.m. on Wednesday morning.  Thankfully, the MRI showed the spinal cord to not be involved with her problems so we were referred back to the bone marrow team.  Kelly started looking at the side effects of Detrol LA and Endocort (the steroid for her belly).  These two medicines could be greatly contributing to her problems.  She plans to discuss them today with the doctor.  She is supposed to get another infusion of the medication to strengthen her bones and IVIG infusion.  So it’s going to be a long day.  I planned to take off work to go with her but with the emergency room visit, I took off yesterday instead.  Dave is with her today.  Kelly’s counts went down according to the ER blood draw results.  Dr. Yanik said he wasn’t really worried about that because she just went down on her steroids again last week (she’s down to 8 mg/day) and they will sometimes go down because of the reduction in steroids.  We’ll see what they are today.

Monday, September 26, 2005 (Day 207) - Let’s go back a week from today – we visited clinic and saw Dr. Choi and Brenda.  They were very excited (as were we) when they found her platelet count was 46 with no help from Neupagin.  Our jaws dropped. We were sooooo happy!  Later in the day, Brenda called to say that her cyclosporine level was low so to increase the medication to 100 mg.  Everything was going fine until Wednesday.  Kelly did a mini-squat to put a gallon jug of milk in the refrigerator (that wasn’t even full) and she felt a pain shoot from her left shoulder blade to her right and then she couldn’t breathe.  She called the orthopedic clinic and talked to Linda but they never did get back to her.  Kelly had plans to visit Meemaw and Peepaw with Ruth and Danette the next day for breakfast.  She thoroughly enjoyed the biscuits and gravy.  I was surprised to learn that she went because she was very uncomfortable with pain in her back from the milk incident.  When she arrived home around 2:00, she called me at work in tears with pain in her back so I know something has to be done.  She called the orthopedic clinic again and talked to Linda.  Linda said if she could get there before 3:30 for an x-ray that Dr. Lee could read it before he leaves.  So Kelly woke up her Dad and off they went.  Dr. Lee said her x-ray was fine and Linda gave her an order for a chest x-ray because her ribs were hurting and she was having difficulty breathing.  She then told her she needed to call her “oncologist” in order to get it read.  Kelly called me at work and I called Brenda at the BMT clinic.  She talked to Dr. Choi and they said Kelly needed to go to ER to be evaluated.  So I met Dave and Kelly at the entrance of ER and off we go into ER at 4:30 (we arrived home at 1:15 a.m. Friday).  Needless to say, it was a long visit and quite frustrating.  Dr. Lee said the x-ray showed no problem with her spine but the CT scan, according to the on-call orthopedic resident, said there were compression fractures at T10 and L2.  He told us to call the orthopedic clinic on Friday to see about getting a TLSO brace that is custom made for Kelly.  Hip, Hip, Hooray!  This is something we have wanted since July. 

On Friday at 9:45 pm, Kelly had an appointment with Dr. Opipari (OB/GYN) and then we called Linda.  She didn’t know anything about the ER visit so she looked it up.  I told her that the ER orthopedic on-call doctor told us to contact the clinic to see about getting a brace fitted for Kelly.  He said he was going to talk to Dr. Lee about Kelly.  Linda looked at the ER report and said it looked like T12 & L2 were fractured.  I told her that was conflicting with what ER told us but whatever is fractured, Kelly needs a brace for her body.  She said she would have to call Dr. Lee to see if he wanted her to keep wearing the TLSO.  We said that we would walk over to the ortho clinic and by that time she would have an answer.  When we arrived, she had an order in hand for us to take to the area where they make the TLSO brace.  Nicole and Nancy were the technicians that created the brace for Kelly.  Nicole was especially nice and seemed to care a lot about getting a brace that would fit Kelly.  While she was measuring, she commented that Kelly must be tall.  One measurement down her torso even caused Nicole to give a "wow" look to Nancy.  I'm assuming they were shocked that Kelly wore the "off the shelf" brace for so long.  Nicole said she wished it wasn't the weekend but that she put a stat on the making of the brace and that she should have it back on Monday.  We told her this would work out fine and that we would come to their office after Kelly was seen in clinic and that she would probably have to get platelets so a time of 12:00 worked out for us both.  As we were walking out, we ran into Dr. Yanik, who happened to be the doctor on the floor at Mott when we were in ER so he knew about Kelly having pain in her back again.  He asked what did the orthopedic doctor say.  Kelly told him that they seem to feel it's no big deal and it will just take time.  Dr. Yanik said, "Well it is a big deal when you have to deal with the pain."  He asked if they mentioned anything to get her stabilized.  Of course, Dr. Lee has told us nothing other then a fracture hurts, there is nothing they can do and with time it will heal.  He said that he would give Dr. Lee a call to discuss Kelly and then said, "You know Beaumont has some of the best orthopedic doctors in the country and you might want to consider going there to see what they have to say."  This sounded like a good idea so I started looking up information about the orthopedic team at Beaumont.  Kelly was really down in the dumps on Saturday, pretty much beating herself up for not doing all of the physical training things that she likes to try and do every day.  Even though she had taken a shower, which takes a lot of energy for her itself going up and down the stairs, etc.  We also walked in the neighborhood for an hour.  She just was feeling bad for taking a break.  I told her she should take it easy since we learned of the new compression fractures.  She is just scared that all the work at rebuilding her leg muscles with physical therapy will go to pot again, which is probably true but she can be hard on herself.  She gets it honest because the Neals have a tendency to be hard on themselves when things don't go right.  On Sunday, I ended up E-mailing Dr. Yanik to ask if he talked to Dr. Lee and if he could tell us where Kelly's spine was fractured now since we had conflicting stories.  I also asked him if he could recommend a Beaumont doctor that we should attempt to see.  

Today, Dr. Yanik, Dr. Choi and Deb all came into the room, which is very unusual because we always see the nurse practitioner first.  Dr. Yanik said he had just read my E-mail and was about to send us the CT scan results as an attachment when Deb told him that we were next to be seen so this is why they all came in together.  He said that he would contact Beaumont on our behalf and arrange for Kelly to be seen by a doctor, taking all the test results along with us.  We all felt it would be worth peace of mind to get a second opinion since our confidence in the current ortho doctor was at an all time low.  Dr. Choi then began asking about the incident last week.  No change were made to medications this week and the really, really good news is that Kelly's platelets were 43 today.  This was a pleasant surprise because when we were in the ER her counts had dipped down to her normal lows.  So we were very, very happy to be told that Kelly's counts went back up - WBC was 3, ANC was 2.3 and platelets being 43.  So, no need for platelets and off we go to the ortho dept. to get the brace but we knew it was early.  We ended up calling around 1:00 and talked to Nicole but turns out she was leaving, which she seemed disappointed (we were, too, because she was really nice).  At any rate, Aaron came in to fit the brace and made an adjustment under the armpits.  You would not believe the difference in the appearance of the brace.  It makes me sad that Kelly was forced to wear a brace that looks way too short for her long torso.  She can breathe better, it's not smashing on her ribs and she feels more support in her lower back.  The BMT team want her to keep wearing the brace even when they supposedly heal until she gets totally off the steroids.  Dr. Yanik, by the way, provided a copy of the CT scan results and it looks like the previous compression fractures have minor distortions in them along with the new one T8.  All in all, it was a good day and Kelly feels very good about the new brace and having her counts go up without the help of Neupagin.  Until next week...

Sunday, September 18, 2005 (Day 199) - Last weekend was rough for Kelly with her stomach constantly bothering her.  She was ready to go to the doctor on Monday and ask that they do a biopsy.  Dr. Levine examined her and feels that she may have chronic GVHD of the intestine so he prescribed a steroid that is normally used with Crone's disease patients.  It's unlike the other steroids that Kelly has been taking in that it does not get absorbed by the body.  It kind of coats the intestines and then goes out of the body.  Her neutriphil count was on .5 and her platelets were 25.  They gave her platelets and a neupagin shot and had her take neupagin shots every day up until Thursday when they wanted her to return to clinic.  We have started to wonder how will we know when her compression fractures are healed.  Kelly continues to want a brace that is molded to her body so I told her to call April in Orthopedics.  She made the call on Wednesday and was referred to Linda who seemed upset that no one looked into getting Kelly a brace molded to her body.  She made an appointment for her to see Dr. Lee at 8:45 on Thursdays morning.  This worked great because Kelly's clinic appointment wasn't until 10:30 for blood draw and 11:30 for clinic.  So she checked into orthopedics and they sent us down the hall to x-ray.  The technician came out and said Dr. Lee wants an x-ray with her standing and without the brace.  Kelly said that she has not stood yet with the brace off so she was reluctant to do so.  The technician went to talk to Dr. Lee and he said she could sit to take the x-ray with her brace off.  Kelly still didn't like that so the technician told us to go and talk to Dr. Lee.  Back down the hall we go.  Dr. Lee finally came out to say that he is 80-90% sure that her fractures have healed and that the goal is to get her out of the brace.  So in order to be sure of the x-ray he needed it with the brace off.  She finally said she would do it.  Down the hall we go again but had to make a stop for a few tears.  Kelly was so scared to take that brace off sitting up.  She was frightened that more fractures could occur when the brace was taken off and why would they take the brace off without knowing they are healed.  We finally made it back to x-ray and two young ladies were assigned to take the x-rays.  They were absolutely wonderful.  They took their time with getting Kelly's brace off and then moving her in the chair.  It was probably one of the longest x-rays they had that day.  We appreciated their help and patience with this scary situation for Kelly.  After that was over, back to Dr. Lee's waiting room.  When he finally came in, he said her fractures looked like they had all healed and that she should start to work on not wearing the brace.  This was good news, however, Kelly plans to take this very slow and easy.  Her physical therapist on Friday told her to sit in a chair and try loosening the brace and sit there for 15 minutes to a half hour.  This seems more doable then Dr. Lee's suggestion of taking it off for 4 hours at a time.   After the x-ray and seeing Dr. Lee, Kelly was seen in clinic.  From all of the tests they ran on Monday, they found that Kelly has a urinary tract infection and the BK virus is back.  Yuck!  Poor kid can never get a break.  So on yet another antibiotic for the UTI.  She goes back on Monday and also has an appointment with the gynecologist on Friday.  She's still going to Med Rehab twice/week and they feel her strength and flexibility have improved.  She's walking more and more without the walker and is now using a cane to go up and down stairs rather then having us as support.  She cooked lasagna on Friday.  It was the first thing baked in my new oven and it was absolutely delicious.  We even walked outside yesterday.  So she continues to make progress.  

Friday, September 9, 2005 (Day 190) - A major breakthrough occurred this past weekend.  Kelly began walking without her walker.  HOORAY!  Another indication that she is getting better.  It might be slowly, but she is getting better.  She saw Dr. Yanik on Tuesday, the crazy clinic day after the Labor Day Holiday.  He took her steroids down 4 mg again, which we were surprised because they just took her down the prior Monday and they have been taking steps down every 2 weeks.  He also took her cyclosporine down to 50 mg.  He gave her a new pill to try for her stomach discomfort, which she has a lot of still.  The stomach pain is a daily occurrence and because she seems to be complaining of getting nausea more, he gave her a prescription for Zofran.  He also gave her a neupagin shot. She also received platelets.  Her counts continue to be low but he thinks once she gets off the immuno suppression drugs that her counts will go up.  It makes her nervous/scared to be going down on the steroids.  She's afraid that her stomach discomfort might be GVHD but she has no symptoms of GVHD of the intestine.  So I am confident that GVHD is a part of her history.  Don't even want to think about it.  It is so exciting to see her walking around now without her walker.  She does still use it for support at times.  Her appointments at physical therapy and occupational therapy are really paying off.  We can see the improvement even if it is only slightly.   Kelly went to the youth support group at the Cancer Center that meets the first Tuesday of every month.  She enjoyed meeting young ladies that are cancer patients around her age and hearing their survival stories.  I'm glad she went and hope that she's able to attend future meetings.  I'm just sorry that they only meet once/month but she tells me they exchanged contact information.  In fact, that is how she met Jill Welch about 2 years ago, whom I've spoke of many times here.  Jill is an inspiration to us.  She is doing so well and gives us hope that soon Kelly will be following in her footsteps to recovery.  

Amy started student teaching at Tappan Middle School in Ann Arbor.  Her final commitment towards her degree at U of M.  She will be responsible for teaching one unit during the month of November.  It should be fun hearing all of her teaching stories.  I hope she's keeping a journal.  I must tell her to do so.  

Saturday, September 3, 2005 (Day 184) - On Monday Kelly saw Dr. Chao who decided to go ahead with cutting the steroids down to 12 mg in the morning and 4 in the evening with the idea that eventually she'll only be taking them once/day.  They have cut down on her Cyclosporine dosage twice since the last journal entry.  She is now taking 75 mg of Cyclosporine twice a day.  Dr. Chao also mentioned giving Kelly a Procrit shot, which is used to help red blood cell production.  She's going to discuss it with the rest of the team and maybe next Tuesday she will get the shot.  She said patients say it makes them feel better.  Kelly is also on the waiting list for ECP treatment, which I don't fully understand yet but she said something about taking the T-cells out and cleaning them up and then infusing them back in.  Another procedure that makes patients feel better according to Dr. Chao.  But we are on the waiting list because it's usually patients with GVHD number one priority.  It is usually helpful with GVHD.  So we'll wait and see what happens.  Kelly is liking the physical therapy and occupational therapy sessions.  She's going twice/week, 2 hours each time.  She really seems to be getting stronger, which makes us happy.  

Many, many thanks to the Toledo Powertrain employees for the fundraiser they conducted last Thursday.  It was a huge success.  Everyone was very generous and we cannot begin to thank them enough.  

Thursday, August 25, 2005 (Day 175) - Kelly visited clinic last Thursday and her platelet count was 21.  So she did not receive platelets just to see what her counts would do over the weekend.  Since her sugar checks have been fairly low it did not take her long to go down 4 units on her Lantis.  In fact, we are considering going down again, which Deb said should be down to 36 units.  For some reason they go down 4 units at a time.  Yesterday, we looked in to getting her a hospital bed for the family room, which we probably should have done a long time ago.  Dave finally made adjustments to the height of the TV so she's much more comfortable now.  She went to PT & OT last week twice and this week once so far but goes again tomorrow.  They've scheduled her through September on Wednesdays and Fridays.  Kelly just said yesterday that she can tell that her legs are getting a little bit stronger so that it good.  Ruth and Danette visited on Sunday.  We sat and watched some home videos, which brought some smiles and laughter to us all.  They also bought food and drinks over.  It was a very nice visit and I thank them.  

On Saturday, I broke my big toe while moving things around in the garage.  Dave has a big steel rack that he uses to transport our bikes on the back of the Suburban.  The darn thing hit me right in my big right toe.  It hurt so bad.  Dave said he's never seen me cry that bad and Kelly (laying in the family room) thought I had lost a limb or something.  It could have been a lot worse.  Ruth came over and took me to the hospital on Sunday.  We called the on-call doctor at the hospital and based on my description she was afraid that I needed to have blood drained from the wound.  But that didn't happen.  They did an x-ray and confirmed a break but not in the joint otherwise I would have needed a cast.  So they gave me a shoe to wear, a tetanus shot, some pain pills and sent me on my way.  I believe, thus far, the tetanus shot has been worse then the toe.  It really hasn't been that bad.  Tolerable.  

Kelly went to clinic on Monday.  Dave had to take her because I was still trying to keep my foot elevated.  They decided to not give her platelets.  Her count was at 23.  So they are going to see what will happen on Monday with her going a week without having her blood count checked or anything.  This is a real milestone.  Going once a week to clinic.  Yeah!  Things are getting better.  It's just that they happen very slowly so it's hard to see the progress.  

Many friends that Dave works with are having a party in Kelly's honor today.  It sounded like it was a big deal.  How nice.  I wish we all could be there.  From what all Dave has told us, it sounds like they have gone out of their way to make it special in Kelly's honor.  We thank everyone with all our hearts.  

Tuesday, August 16, 2005 (Day 166) – The past week has been one of little change.  Kelly still deals with the compression fractures having her pretty much bedridden but that’s all about to change, hopefully!  She is scheduled twice/week for the rest of this month to go to Med Rehab.  She will go for 2 days a week, 2 hours/day.  She will have physical therapy for one hour and then occupational therapy for one hour.  We hope this gets her back on her feet without having to use a walker. 

On Monday, her platelets were at 21.  They had mentioned last Thursday that they might let her go without platelets during the week but since she is going to physical therapy twice this week, they decided to go ahead and give them to her.  She actually received single-donor platelets yesterday, which she hasn’t had for about 3 years.  She used to get a pretty good bump with single-donor platelets.  So they want her to return to get a blood draw and possible platelets on Friday.  No seeing the clinic twice/week – just once/week now.  If her platelet count is below 20, she will get a transfusion.  If above 20, they will see what her count does without getting a transfusion.

They backed her Medrol (steroids) down to taking 12 mg in the morning and 8 mg in the evening.  They also took her blood pressure pill down by half since her pressure was on the low side yesterday.  Kelly’s blood sugars have been a lot better lately also.  So if her blood sugars get too low (60-70) they told her to back off the Lantis by 4 units.  She currently takes 44 units of Lantis in the morning (but I just learned tonight while doing her meds for the next 4 days that she took her Lantis down to 40 units.  Things get better day-by-day.  Now we just have to get her walking without assistance.  .  

Tuesday, August 9, 2005 (Day 159) - WOW!  It has been 8 days since I last updated the site.  Once again, my apologies for the delay.  With Kelly pretty much bedridden, I find my days are filled up.  Besides, when I do come home from work or have some free time, I prefer to spend it beside her sofa bed either watching TV or taking care of her.  

She stays strong.  Not sure what the last entry was for steroids but now she is down to 12 mg twice a day.  They plan to wean her again next week.  They have also allowed her to skip the clinic visit for Thursday.  She only needs to go in for a blood draw and platelets, if needed.  So this is a sign that things are getting better.  Her platelet count on Monday was 24, which was a surprise, but they still gave her platelets.  Usually, they don't transfuse platelets unless they are below 20.  But that's okay.  We prefer a platelet transfusion, even though it takes all day.  By the way, the blood bank is still low.  Please go and donate blood.  The phone number is 1-800-GIVE-LIFE if you need to find a location.  

Last Wednesday, Kelly came down from the upstairs bedroom where she was much more comfortable as far as bathroom, watching TV, etc.  She was in the bathroom attending to business and her back popped again causing her much pain.  She complained about it at clinic but Deb stressed that they are not the experts with her spine and that in cases like this we need to call the orthopedic doctors.  We discussed how this has been difficult because we have only seen the orthopedic doctors while in-patient.  So Kelly and I sat down while waiting for platelets at Med Inn and listed a bunch of questions for the orthopedic clinic.  On Friday, Kelly called April and she set it up so Kelly could see Dr. Lee at 12:30 but had to go and get x-rays prior to the visit at Briarwood.  This caused a big shuffle because I have the Alero, which is easier for Kelly to get into with her back problems, plus the wheelchair is in the trunk.  I drive home to exchange cars, do various things to get her ready for the visit and go back to work.  Luckily, Dr. Lee said her x-rays did not change from the last time and that bone pop from time-to-time.  He said that she has fractures (and presented a picture of her spine to illustrate) and that they will hurt for a period of time.  She has to control the pain with medications but that she also must keep moving.  This was a real relief to hear that there was no further damage to her spine and that she will eventually heal but it will take time.  We decided the weekend would be basically more resting and recovery and that Kelly would be up and about more come Monday since she had to go to clinic.

On Monday, Dr. Levine said his neighbor is the Director of the Rehab Clinic that is at Briarwood and that the two of them discussed her and they would like to have Kelly be the first bone marrow transplant patient to go to this facility for physical rehabilitation.  This is exciting, however, we are hopeful that they are very careful and don't injure her more due to the steroids and also are aware of the infectious implications.  I plan to have Kelly take some Clorox wipes with her to wipe off everything before she uses it.  Deb said she made the call to the facility and they seemed very enthusiastic about it.  Kelly did receive a call today, however, she has already set up an appointment on Friday with the physical therapist that is visiting the home so she will have to figure out another time to meet with the Briarwood team.  

After getting platelets, Kelly was ready to walk to halls of the cancer center.  While we were there on Monday we ran into many doctors that would stop by say hello or even know that we live in Saline.  We knew that they were probably talking about us in their Friday meeting about Kelly going to the rehab facility.  This would be really neat to find that having availability to the rehab center would make a difference to BMT patients.  We are excited but a little apprehensive.  We will keep everyone updated.

For the first time, Dave planted a garden in the back of our house so we are reaping the harvest right now of zucchini.  So much that I took the time tonight to make zucchini bread.  Yikes!  Don't ask me how I threw that together while making dinner.  I hope it's good.  Otherwise, we are awaiting the tomatoes (he brought in several plum and cherry tomatoes today), broccoli, and more zucchini.  I think his squash plants have taken over the garden.  He said he saw a watermelon yesterday so let's see how he does.  The rabbits hang out in the mulch of our backyard.  We know they are trying to survive since a developer is building homes in the corn fields that used to be behind our house.  I'm surprised every morning that Nikka doesn't go wild but they blend so well into the mulch that she doesn't even know they are there.  

Monday, August 1, 2005 (Day 151) - Kelly came home from the hospital on Saturday night.  Yeah!!!  It was nice to be home even though we still did not sleep in our normal beds.  Kelly is very weak and because of all of her back pain the physical therapist recommended that she stay on the 1st floor and take sponge baths until the at-home physical therapist had a chance to work with her.  So Dave made a bed out of our sofa sleeper in the family room with Kelly's mattress on top.  I slept beside her on the other portion of the couch.  She is desperate to get back upstairs to my bedroom.  It would be a lot more comfortable.  

In the discharge papers we read that she was admitted for hypoxia and looking "dusky."  The Michigan Visiting Nurse that stopped by yesterday for all the paperwork said that Kelly must have had a gray look to her and that's why, with the low oxygen level, Dr. Choi admitted her.  Kelly went in able to walk well with her brace on but came home with a walker and a wheelchair.  This is only temporary but may take a while to resolve with taking it easy.  While laying in bed, Kelly does exercises to strengthen her leg and arm muscles.  Chris, the physical therapist that worked with Kelly in this hospital (very nice), gave her a belt to support her SI joint (sacroiliac joint), which helps a lot in addition to her back brace.  The best position right now for Kelly is laying down in bed.  She has some discomfort when she sits with her brace and belt on.  She says it's better to stand then sit.  

I just have to record one of the funniest moments Kelly and I had in the hospital.  There is a tendency for the room to be dry.  Kelly asked me for her nasal spray and her eye drops.  I gave her both and the next thing I know she is shouting, "Oh, no.  I just put nasal drops in my eye."  We read the label first to see the ingredients and felt better about it but then we rinsed her eye with water.  Then, we laughed so hard that we cried.  It was so funny!  One of those moments between the two of us that I'm sure we will laugh about every time we recall the incident.  

She had to go to clinic today and we received GREAT news.  Her platelets were at 43 so she did not need a transfusion.  This is very encouraging because while in the hospital she needed platelets almost every day.  Her platelet count on Saturday was 24 but Dr. Chao wanted her to have a platelet transfusion before we left.  So for Kelly to go 2 days and have her platelet count today to be up to 43 was a pleasant surprise.  We even saw Dr. Chao in the hall and she was very glad as well to hear this news about her platelet count because she was worried that she released Kelly too soon.  The physical therapist just called and will come tomorrow morning to our house.  They are suppose to come 3 days a week.  This should get Kelly up and going in no time.  She's so determined to get stronger but is very careful with her movements because she doesn't want any more fractures to occur.  She is a trooper and my hero!  She truly amazes me with her strength both mentally and physically.  

My mother's birthday was yesterday so the family met at Damon's for dinner.  Dave stayed with Kelly while I went to the  celebrate.  It was very nice.  The highlight was having my Mom's picture up on the big screen announcing her birthday.  She was sooooo cute.  Traditionally, I have taken my mother with some of our friends away around her birthday for a "girl's weekend."   I really missed our getting away this year but I promised her that once Kelly gets better, she is on my list for a getaway weekend.  Happy Birthday, Mom!  You're the best.  Thank you for all your support (Dad, too) and I love you both more than words could ever say. 

Wednesday, July 27, 2005 (Day 146) – On Monday, the doctors ordered more x-rays on Kelly’s spine and hip area.  Chris of physical therapy stopped by before she went to x-ray to see if she could stand with her brace on so she could go to x-ray.  That was the event of the day.  On Tuesday, the doctors reported that she has no further damage to her spine and that the problem she is having with her hip is sacroiliac joint dysfunction.  You can read up on this condition at http://www.spine-health.com/topics/cd/sjd/sjd01.html.  So now she is able to get up to go to the bathroom by putting on her back brace, standing up bedside and then pivoting.  Chris also delivered a walker to her room last night.  He plans to stop by again today to help her work with the walker.  She had me help her do some exercises with her legs that Chris showed her.  They have decided to go back to transfusing her if her platelet count is 20 or below. 

Saturday, July 23, 2005 (Day 142) - Kelly is having a rough time.  She was progressing along with a positive attitude after all the news we've been told since Monday and yesterday her back was injured again on a trip to the bathroom.  Now she's down in bed totally!!!  They don't want her up at all.  If that wasn't enough, this afternoon they came to her room to do another spine and chest x-ray and the technician hurt her back again.  Pain management had to be called once again to get her pain back under control.  Her back is a mess.  What is going on???  They need to do something to stop her from injuring her back.  Dr. Chao was doing the chest x-ray as a precaution.  Kelly's oxygen level, when not on oxygen, dips below 92 occasionally.  She said the Dilaudid could be causing decreased oxygenation.  She is trying her best to begin backing her off some of the meds.  She stopped the Actigol today and a vitamin that is usually required in adults to do with folic acid.  Kelly's level has been fine all along.  She plans to drop her steroid level again on Thursday.  Right now she's on 16 mg twice a day.  I expect she'll take her down to 12 mg twice a day on Thursday.  When I saw Dr. Chao this morning, she said the earliest she could expect to go home is Tuesday but this was before the x-ray occurrence.  We were asking about getting Kelly a walker to try to get her out of bed but Dr. Chao wants her totally on her back today and tomorrow.  On Monday, she wants the occupational therapy team to stop by to help with trying to avoid these back injuries.  

Thursday, July 21, 2005 (Day 140) - Today marks 3 years since Kelly was told the devastating news that she had leukemia.  She has been strong in her fight against this terrible disease and continues to fight.  She was admitted to Mott hospital on Monday.  She had a clinic appointment on Monday.  Both Dave and I  were there this time because we did a lot of thinking over the restful weekend and wanted to talk to the doctor about some issues.  They were very good about the whole thing.  Explaining that her back issue was at first thought to be more to do with the muscles in her back being weak.  Deb explained that Kelly just has so many things going on that sometimes it is very difficult to determine what is going on and most often things occur because of the high steroid dose.  During the visit though, Deb noticed Kelly's skin tone on her legs were purple and on her arms were pink.  She kept on checking her oxygen level, which was low, so they put oxygen on her.  I have since found out that the diagnosis is hypoxia.  Kelly was put to bedside right away because she was to get platelets and IVIG infusion.  They decided to get another x-ray and a CT scan of her kidneys and liver because of her complaints about her abdominal area.  Around noon, Dave called me to say they were admitting her.  They wanted to attempt to get to the bottom of Kelly's problems and thought it would be best to admit her for a bunch of testing.  By 3:30 we were in 7 Mott, Room 7692.  Many test results were coming back with good results.  They did one test right after she urinated to see if she was emptying herself and she was emptying.  The x-rays of her back showed that she may have experienced a little bit more compression fractures but it was nothing that would warrant them doing another MRI to consider surgery.  The bomber hit last night.  They did an MRI based on the MRI she had done the beginning of this month.  They reported that she had a questionable spot on the cerebellum that needed to be re-evaluated with another MRI.  We received a call from Dr. Chao around 8:00 saying that there is a 2 centimeter blood vessel that had evidence of hemorrhaging recently.  She had put in a call to the neurology doctors but they had an emergency.  She was hopeful to talk to them last night and have them stop by to see Kelly.  Well the a neurology resident and intern stopped by to say that she has a cavernous angioma.  The resident said they will probably do a CT scan or an angioplasty if they suspect further damage.  This had Kelly very upset and scared.  She was finally able to rest around midnight.  The doctors explained that 2-3 percent of the population have these and don't even know it.  That it is probably something that just has to be watched over the next few months.  He also mentioned that it could have been caused by the radiation.  As a result of this diagnosis, Dr. Chao ordered Kelly to get platelets and to maintain a count of 75.  Her platelets have not been much above 20 these days.  So last night she received 2 transfusions and today she received 2 more.  The nurse said the check this evening was 78 so she will not need platelets tonight.  The attending doctor finally came in to talk to us about this and he said that he believes that this is something that they will be keeping an eye on and that the plan is to keep her platelets 75 and up for the next two weeks at least.  Everyone remember... there is a shortage of blood products in our area, so please donate blood.  

The orthopedic team made adjustments to her back brace and have made it much more comfortable.  It won't dig into her legs and cause bruising anymore, they put a padding in the belly area to help her breathe more easily and they adjusted it at her chest area to fit more snug.  She said it made a big difference.    

We truly, truly, truly appreciate the nursing staff on 8A at University Hospital.  The nursing staff on 7 Mott are terrible.  I think it may be because of it being pediatric patients and Moms hang around and maybe do a lot of things for there children.  But that is no excuse for them no answering call lights for 10-20 minutes.  Kelly is in an isolated room because of the VRE virus so the docs and nurses have to gown up to come into the room.  A lot of them don't bother but we had one nurse that would stand at the door and say here are your 9 o'clock pills and sit them down on the counter.  They were also wanting to measure Kelly's output in the bathroom and they would never come in to empty it.  It was mostly me doing the emptying and telling them the amount to record.  It's unbelievable the difference in the care.  Kelly has definitely been verbal about this with the doctor, which is good.  There is no way that she should have to wait to get help to put her back brace on in order to go to the bathroom.  She did, however, learn to put it on herself when she feels in a crunch.  

So it's been a busy week.  Dr. Chao said yesterday that she was going to try to send Kelly home by Friday but the neurology team think she may have to stay a little bit longer.  We hope it's tomorrow.

Sunday, July 17, 2005 (Day 136) - It has been a weekend of rest for Kelly.  Her back has been hurting and she's also hearing the popping sounds when she moves so she decided to just lay down all weekend beginning Friday.  She did get up to eat most meals.  On Thursday, she received the last infusion of Rituxan.  She also received an infusion of Cidofovir for the BK virus and platelets, of course.  She received a neupagin shot because her counts are still low.  She is very frustrated with this back thing.  We plan to discuss with the doctor tomorrow that we are disappointed that nothing was done when she began  complaining about her back 3 weeks ago.  Kelly is also being very hard on herself for not taking it easy.  I think it's the steroids that give her energy to want to do things but then she should have been resting with the back problem.  This is why she's taking it easy this weekend.  We don't see the orthopedic doctor until August 13th.  

Tuesday, July 12, 2005 (Day 131) - Kelly had to be added on to the BMT clinic's schedule yesterday because we had no appointment from her being in the hospital.  Her platelets were only 11 so she received a transfusion.  Deb called today to say that her urine showed she has bacteria again in her urine so they are calling in a prescription for an antibiotic.  Her cyclosporine level is high again so they told her to skip the dose this morning and go back to 125 mg twice a day, which is where she was when she went into the hospital.  The adult BMT team raised the dose to 150 mg while she was in the hospital.  

Sunday, July 10, 2005 (Day 129) - Kelly arrived home on Friday night around 11:45 p.m.  It took them forever to get the discharge orders ready and then we had to stop at a pharmacy to get her prescriptions filled.  She's doing pretty good thusfar with the pain management.  The MRI showed that she had 4 fractures in the spine.  Leigh had mentioned a type of procedure the orthopedic team could do that would insert space between the vertebrae but they did not think it was a great benefit to Kelly.  It's difficult reading the medical jargon on a report so we will ask the doctors what all of it means when we go to clinic on Monday.  They also had a report about her knee MRI that we will ask about as well.  On Friday Kelly needed platelets and red blood cells.  Her RBC was down to 7 and her platelets were down to 8.  There is a shortage of blood in our area so Leigh had to make a case to get the blood.  She wanted to give her 2 units of blood but was only able to give her one unit.  So everyone donate blood when you can.  Dr. Cooke called Kelly yesterday to see how she is feeling.  That was nice.  He was again apologetic about the room change.  Kelly's sugars seem to be under better control.  The doctors upped her Lantis to 40 units in the morning and then she does 4 checks a day (before meals and before bed) and gives herself Novolog based on a sliding scale.  

Thursday, July 7, 2005 (Day 126) - The doctor's (pain management team) are doing a good job of getting Kelly's pain level under control.  There are, however, times when she twists the wrong way or I lift or poke her the wrong way while trying to adjust her back brace that are very uncomfortable for her.  They gave her the cidofovir yesterday for the BK virus.  They gave her a medication to help strengthen her bones yesterday by IV today and the Rituxan, which is her 3rd dose, one more to go.  I can't remember the name of the bone strengthening drug but will try to record it later.  The orthopedic team stopped by to re-shape her back brace to make it more comfortable.  It is very uncomfortable at her sternum so she had washcloths poked in everywhere to pad that area.  Hopefully, they'll be able to make it more comfortable.  They walked in right at the time when Dave was coming with salmon and steak dinner.  After we got rid of the orthopedic team, the BMT adult team came in.  Kelly was shaking because her sugar was at 77.  I gave her juice to drink and we put food in front of her so she could start eating but basically had to tell the doctors that she doesn't like eating in front of people so they finally left and came back later.  This just adds to the feelings of being uncomfortable with the adult BMT team.  But I must say that Leigh has been very informative and supportive.  The one nurse practitioner that we kind of had problems with would not even look at us as we were walking through the halls.  The doctor that is on the floor (Mineshi) we have never met before.  Thank goodness we have Leigh.  

Jenny stopped by to visit last night.  We had a few emotional moments while she was there.  Kelly was needing hugs.  This is a very difficult time for Kelly.  Being semi-immobile (although we have walked the 8A halls 2 times already) she's realizing now when she fills out medical forms that she has to add osteoporosis to the list of problems.  We tried to tell her that many people, including athletes, develop osteoporosis due to overuse of joints.  She's concerned about her back healing.  Leigh did say that she will look into a procedure that can put space in between the vertebrae to help the discomfort.  She is waiting until they get the MRI results to see if this is necessary.  We also asked about the MRI of the knee, which she plans to look for the results.  It's so awkward going over to the adult team.  I don't like it at all but like I said, thanks for Leigh.  I'll have to do something to express our gratitude.  

Kelly's sugar level seems to be way out of whack so they need to figure out what is going on.  They are giving her Lantis daily plus Novolog at mealtime.  She was up in the 300s earlier in the morning and then dropped to 77 at lunch.  They need to get this straightened out before we leave.  

Putting on the back brace is a chore that becomes easier the more we do it.  Kelly rolls back and forth in the bed and then adjusts the brace to make it comfortable.   

Kelly's hair is growing back very DARK and it also looks thick.  We are hopeful that she will come home tomorrow.  We shall see.  In the meantime, we have started watching the 24 series on DVD.  It is excellent.  We are hooked.  We are on the fourth disk of the first season and have 2 more DVDs to go to get to the 2nd season.  I would recommend it to anyone that likes suspense.  

Tuesday, July 5, 2005 (Day 124) - Yesterday and today have been very challenging days.  I forgot to mention that on Sunday evening Dr. Cooke decided to have us moved up to the 7th floor of Mott.  He felt it was better that she be on the BMT floor.  The nurses were absolutely wonderful and we didn't want to move but he felt it was best.  So we pack up and go to a room that had a defective TV remote (you know how stressful that can be), a flickering bathroom light and no wood floor.  Are we getting picky, or what.  Just wait, it gets better (or maybe worse).  Yesterday, for me, started out at 8 a.m. with Kelly calling me in tears.  She was asking that I come to the hospital right away.  When I arrived, a pain management person was in the room giving Kelly large bolices of Dilaudid that she could get four of every 15 minutes until the pain subsided.  What happened?  Kelly said an intern woke her up asking what she would rate her pain level.  Kelly said, "I don't know because I'm just waking up."  Suddenly feeling the urge to go to the bathroom she asked the intern to help her put the back brace on so she could go to the bathroom.  The young lady said she didn't know how to do it, put the brace out of Kelly's reach and then left the room.  Kelly began signaling for the nurse but no one came.  She went ahead to the bathroom and basically injured her back again because it was very difficult for her to get up off the toilet.  Kelly got back in bed and the oxygen monitor got wacky and began sounding a loud obnoxious alarm.  Kelly buzzed for the nurse for 45 minutes and no one came to help her.  This is when she called me in tears.  Like I said, by the time I arrived, the pain management personnel arrived and was trying to get her pain back under control.  I found that the no answering of the page occurred due to a shift change.  Our nurse, Sandy, who turned out to be a very caring, helpful nurse, was not getting the page for some reason.  It seemed that the toilet was lower then normal (remember we are in the pediatric BMT unit).  I am sure that this contributed to Kelly back discomfort once again.  I asked Sandy for a commode, which she went to a storage area and obtained right away.  Our next task was to get really familiar with the back brace.  At first, I felt I could not handle getting the brace on Kelly due to my arthritic wrist.  But Kelly learned to roll from side-to-side when we put on the back brace to get it into position.  Then I would strap the front portion to the back and Kelly adjusts the straps to where they fit comfortably.  It's amazing how much work these back braces can be.  I kept telling Kelly that my girlfriend Vicki had to wear the back brace all the time after having back surgery.  Kelly only has to wear it when she is not laying flat.  She cannot be inclined more then a 30 degree angle.  She likes the brace support so is very willing to put it on but also feels good when it comes off.  I decided to spend the night to see how the night progressed with getting nurses to help.  The nurse that she had during the night was wonderful and very helpful.  I physically got up once to help Kelly, but she wants to be so independent and do all this herself.  Even though I only got off the couch once during the night, I was awake for all the other times she needed assistance.  She's such a trooper trying to do all this herself but a person wearing this back brace, especially having to put it on while laying down, definitely needs help.  

So things were going okay today until about 12:00 when the charge nurse came in and said that we were being moved to 8A and that Dr. Cooke would be coming over there to see Kelly every day.  So we begin to pack our things because Kelly was to be taken down for an MRI at 2:00.  Shortly later, Dr. Cooke came in to first apologize that the MRI was happening today because he had intentions of having pain management there during the procedure in case she was unable to lay flat on a hard board for 45 minutes to an hour but the people that coordinate such things were anxious to get her scheduled and they did so without the pain management.  The pain management team had visited earlier this morning and told Kelly to take an Ativan 15 minutes prior to being picked up.  Kelly, once again being a trooper, told Dr. Cooke that she will try her best to do it.  He assured her that if she was unable to make it through that he would re-schedule the MRI.  Then we talked about the move to 8A.  He said that once we move, he will NOT be seeing Kelly and that the adult BMT team would be monitoring her in the hospital.  While we are very happy with the nurses on 8A, we definitely have a confidence problem with the adult BMT team. This is the reason why we are with the pediatric team.  So this is putting us into a very awkward position.  Isn't it enough that Kelly already has to deal with leukemia and a bone marrow transplant rather then deal with having to see doctors that you have put in writing have caused some distress.  We were not happy. But they were moving patients all around on the pediatric floor today.  They have 3 children coming in for bone marrow transplants today and had to get them in hepa-filtered rooms.  Let me tell you how extremely sad it is to see all these young children walking around with bald heads and IV poles filled with multiple pumps and to administer all these heavy duty medications.  

Kelly made it through her MRI fine.  She said she even dozed off a little.  They also had a bubble pad for her to lay on.  Another problem occurred, however, when the MRI was finished.  The charge nurse told us that after the MRI Kelly would be taken to 8A and her room is 413.  I stayed behind to transport all of our belongings to 8A and still at 5 pm there is still no Kelly.  I asked Jeri, the 8A nurse, if she would call to see what is going on and went down to get us all some dinner in the cafeteria.  My phone was ringing as I was paying.  When I heard my voice mail, I couldn't believe it was Dr. Cooke saying that they were wondering where I was and that Kelly was over there waiting.  I called Dr. Cooke right away from the cafeteria and was told that he was on the phone.  The lady that answered the phone said that Kelly was on 8A.  I told her that Dr. Cooke left me a message that she was over at 7 Mott waiting for me.  How ridiculous can this get!!!  I got tired of waiting and went up to the room with the intent of running over to 7 Mott when I dropped off the food.  Kelly was in the room.  She had waited around in a wheelchair for an hour wondering where I was.  I can not believe this!!!  They were the ones that told me that Kelly was going to be brought to 8A once her MRI was through so I had to move all the stuff.  Did this all go haywire or what?  Dr. Cooke ended up calling Dave's cell phone once he got to my voicemail.  He did say that he will stop by and see Kelly every day.  I must say the room accommodations are much better on 8A.  We will see how the doctor thing goes.

Endocrinologist doctors have been visiting Kelly every day since being in the hospital.  Her sugar levels have been way out of whack.  So they are changing her insulin so that she has to count carbs and then give herself an insulin shot based on the number of carbs she is ingesting.  I think this may be good for our whole family.  Make us more nutrition conscious.  They are also talking about giving her a medication once every two months to strengthen her bones.  Because of the full body radiation, Kelly has essentially gone through menopause and will need hormone therapy as well.  My poor girl.  What a devastating disease and treatment to try to cure.  I can only hope and pray that her will to live and fight within her gets her through all of this to enable her to live a fulfilling life.  We are in the process of reading a book that Rev. & Mrs. Nelson sent to me - "The Purpose Driven Life."  We each would love to know the purpose of all this.  Sorry to be so dramatic but this is taking us to our limits (and I am really tired).  When will it get better?  I pray soon.

Sunday, July 3, 2005 (Day 122)  - Kelly kept feeling that something was not right with her back.  Well, she was absolutely right and we wish that something would have been done long before Friday when she was put back in Mott hospital.  She has a compression fracture in her spine.  Here is how the week went.

At Monday's clinic appointment Kelly continued to complain about her back.  Kelly is still FOS - full of stool - so Dr. Levine continued to recommend methods she should try to get rid of it.  He feels that her back problems are due to no physical activity and recommended that she walk 10-15 minutes 3 times a day.  Her ankles were still very swollen.  He started her on Lasix.  He went down on her steroids, telling her to take 48 mg in the morning and 32 mg at night.  She went bedside to receive platelets.

On Tuesday, Kelly was pretty active, which I told her that she needed to take it slow.  She attempted on Tuesday night a method to assist with the FOS problem but it didn't work and they didn't want her to try it again unless they gave her platelets.  She just hates to be laying around all day long and wants to feel better so badly that she thought the moving around would help.  Well, on Wednesday morning, she woke up with excruciating pain.  So much so that she was on the edge of going to emergency.  Now that we know about the spine fracture, I wish she would have made that choice.  She took her pain meds and when they finally kicked in, she felt better.

On Thursday, of course, we had gotten no where in relieving Kelly's FOS or back pain.  They wanted to add cidofovir to the infusion today along with platelets and Rimaxin so Deb rushed her over to bedside so she could fit everything in.  We arrived around 8 and got home around 6.  When Dr. Yanik stopped by, he decided to do an x-ray of her back.  Once again, they gave platelets in an effort to try to get rid of the FOS.  Thursday's attempt was more successful but she still had a long way to go to empty herself. 

On Friday, I took a vacation day and we decided to visit my parents. Deb called the house and talked to Dave saying that Kelly had a stress fracture in her spine and that she should not lift or carry anything.  Dave called to let us know and Kelly wanted to talk to Deb so she put in a page for her.  Kelly explained to Deb that her back had popped loudly when she was trying to put on a t-shirt.  The pain was so intense that she yelled out and it took her breath away.  Because of this, Deb told Kelly to go to emergency so she can be re-evaluated.  So around 3:30 we left my parent's house and arrived at ER around 5:30.  What a terrible, long ordeal.  To make a long story short, it was decided that she should be admitted for pain management.  The ER did a terrible job of pain management while she was there.  We were finally put in a room at Mott at 6:30 a.m.  

On Saturday afternoon, Dr. Cooke stopped by to talk and exam Kelly.  He asked about the ER visit and we said it was the worst visit we've ever had.  He said the next time if we don't see anything happening within an hour to insist that they talk to the BMT peds doctor on call.  Part of the problem last night was that the doctor did not call the correct doctor to get her admitted.  I guess the ER doctor finally reached a doctor, during the middle of the night, that was willing to do something about Kelly and so they put her on the 6th floor.  Dr. Cooke was apologetic for us having to go through the ordeal.  The thing about it is that we gave the ER doctor 3 names of BMT peds doctors and even told him that Kelly was to see Dr. Cooke on 7th floor Mott on Sunday and that he was the doctor running the floor. Dr. Cooke said that he was aware that we were going to ER because Deb had called to talk to him.  He figured that since he did not hear anything that everything was progressing as they planned.  He had no idea until this morning that we basically sat in ER all night and nothing was done.  The next ER doctor that came on did order an x-ray of her back to see if any further damage occurred (around 5 a.m.), which probably made us have to stay longer in ER.   How FRUSTRATING!  Next time, I'll go and use my cell phone and call the on-call doctor myself.   At any rate, the orthopedic dept. provided Kelly with a back brace that fits around her entire upper torso.  They want her to put it on anytime she is more then 30 degrees inclined on the bed or if she needs to go to the bathroom.  What a pain this is but Kelly says it does give her a lot of support.  But because they are wanting to be aggressive getting her FOS problem resolved, she will be going to the bathroom frequently.  We will be tackling that problem today.  She was exhausted last night.  When you're admitted, they have people coming in constantly evaluating you so she basically had 5 hours sleep over a 48 hour period.  That's why we asked if we could wait until today to tackle the FOS problem.  I left around 11:30 last night and hope she was able to get a good night's sleep.  I did.

Sunday, June 26, 2005 (Day 115) - On Thursday, Kelly had a clinic appointment.  Dr. Levine was seeing patients in the clinic.  He did quite a few things that we hope will help Kelly feel better.  First of all, her ankles (cankles, as she calls them) were very swollen.  He wants her to take Lasic once a day.  Today is the first day that it appears some of the swelling has gone down.  He prescribed a patch that will provide Kelly with continuous pain medication rather then have her waking up in pain because she needs to take her pain medication.  She was suppose to begin cutting back on the oral pain medications she takes as it would take the patch 24-36 hours to begin working.  Thusfar, she continues to take her oral with the patch.  Not working too good yet.  She has to change the patch every 3 days so I changed it this morning.  Hopefully, it will start kicking in so she doesn't have to take so much pain meds that is causing her stool problem.  Dr. Levine felt that her right side was filled with stool so he had a x-ray done.  He said, "This is a case of FOS - full of stool."  We all laughed and I said, "That is the nice way of saying it."  He was right so they have her taking Miralax once a day.  So far it's only partially working.  She's had to take Senna as well.  On Thursday she started her first day of getting a treatment that is used with Non-Hodgkins Lymphoma patients.  They have found in the past year that it helps with GVHD.  The first administration of the drug took 5 hours.  They start off slow to see if she had any side effects that developed.  Next Thursday she will get the 2nd dose of 4 and the nurse said since she did well with the first administration of the drug, she will be able to bump it up so it should only take 3-4 hours.  Dr. Levine feels that Kelly's back pain is due to poor posture.  Because of all the belly pain she's having, she is probably slumping forward, causing her back muscles to become weak.  He showed her a way to stretch her back.  She has been doing that and she says it's beginning to feel better.  Although, I think something happened last night while sleeping because she's finding that her back is hurting some today.  Well, that is it until tomorrow's visit.

Monday, June 20, 2005 (Day 109) – We received absolutely wonderful news today.  Kelly is 100% donor!  She still has a lot of pain from the BK virus and the GVH in her lower GI but is managing it fairly well with the pain medications.  Her platelets were 18 today so she needed a transfusion.  She had to start an antibiotic because of a bacterial infection.  We go back to clinic on Thursday.  Apparently, there is more to hear about the bone marrow results.  We'll keep you posted.

Saturday, June 18, 2005 (Day 107) - One of Kelly's best friends, Chandra Mytych, married Jason Denton yesterday.  After getting the news about being in remission, I guess Kelly started thinking about missing another good friends wedding so she called me at work upset and saying she wanted to go.  I told her if we get the okay from the doctor, then she can go.  They said she could go as long as she wears a mask.  So, Kelly and I went to the reception.  We didn't tell anyone that she was going to be there because we know how things can change from good to bad in a hours time.  So to see Kelly there was a big surprise to everyone.  And Pam, Chandra's mother, wanted the DJ to announce Kelly and have her stand up to surprise Chandra because the bridal party had not arrived when we got there.  It was a very nice surprise for everyone.  We wish Chandra and Jason a wonderful lifetime together.

Kelly had to go to adult infusion for a blood draw.  Her platelet count was down to 14 so she received a platelet transfusion.  Her ankles were swollen this morning.  Maybe because she wore shoes that had a little higher heel then she's used to.  Don't know, but she said it was nice to see everyone last night.  

Friday, June 17, 2005 (Day 106) – Kelly went to clinic yesterday to find that the Upper GI test came out negative but the Lower GI test was positive for GVHD.  So Dr. Yanik increased her steroids to 48 mg twice a day.  He also increased her pain medication because she’s still having extreme pain in her back, legs and stomach.  He said that her stool sample tested positive for VRE.  VRE is an abbreviation for Vancomycin Resistant Enterococcus. Enterococci are bacteria typically found in the human bowel and normally don't cause disease. In recent years, due in part to the overuse of antibiotics, strains of enterococci have developed a resistance to Vancomycin (an antibiotic). These strains are called VRE. VRE is not harmful to healthy individuals but can cause problems for people who are seriously ill with a weakened immune system.  Dr. Yanik said they don’t really do anything about VRE unless it infects the blood so they will watch her closely.  Dr. Yanik said if Kelly is hospitalized while having VRE, everyone (doctors, nurses, visitors) would have to gown up to enter the room so it doesn’t spread on the floor.  They did not have the results of the bone marrow biopsy yet.  They plan to call Kelly today to see how she is managing her pain.  If she is still in pain, he wants to put her back in the hospital.  They believe the bone marrow biopsy results as far as remission will be in today so they will tell her the results when they call. 

Hallelujah!  Kelly just received a phone call from the doctor saying that there is no leukemia in the bone marrow.  We will find out next week about the DNA. 

Tuesday, June 14, 2005 (Day 103) - Today was a very rough day for Kelly.  We started off at 7 am at blood draw and then waited in the waiting room until about 9 to get called for platelets.  Her platelet count was at 37 so they gave her a transfusion that bumped her platelets up to 53.  Deb said she wanted to do this as prep for the bone marrow biopsy and spinal tap.  We didn't even know that she was to get a spinal tap today.  It was just for testing purposes, no chemotherapy.  Deb started with the bone marrow biopsy.  She had Kelly laying on her side, which is a first.  She had to pull four syringes of liqud, which was very painful for Kelly.  Then she had a difficult time getting a piece of the bone.  Kelly was in tears by the end of the biopsy.  She was bleeding quite a bit from the low platelet count.  Then Deb tried the spinal tap.  She tried 3 times but could not get any spinal fluid to come out.  She called Dr. Yanik and he came in to try with her tucked in the fetal position on her side and then sitting up.  He had trouble as well.  So they decided to not try anymore and to do it again in a month or two.  They kept apologizing for being unable to do the spinal.  Deb said it is going to be okay to do this later so not to worry ourselves over it.  Kelly was in tears and so was I.  I hate to see her have to go through all of this.  And to top it off, yesterday, when she was getting ready to come home from the hospital, she tried to lift her suitcase.  She must have pulled a muscle in her back.  That is giving her a lot of pain also.  She lives in pain and has to try to manage it with medication.  We should hear on Thursday the results for being in or out of remission.  The DNA tests will come next week that determine the percentage of donor cells in her bone marrow.  We want it to be 100%.  I hope she feels better tomorrow.  She just has one appointment in the afternoon at the Kellogg Eye Clinic.

Monday, June 13, 2005 (Day 102) = Kelly came home from the hospital tonight.  They were able to get control of her pain pretty quickly, which was good.  On Saturday, they did the endoscopy and colonoscopy.  In the afternoon, the doctor said because Kelly was feeling better and she looked so good that she did not think that she had GVH of the intestine.  This is good.  But if it's not GVH, then what is it?  We will know the results of the tests some time this week.  We hope it was nothing more than irritable bowel, which is something she has been diagnosed with before.  They were giving her neupagin and platelets every day.  Apparently, they want her platelets above 50 for the bone marrow biopsy that she will get tomorrow morning.  We will probably have to wait a week for these results.  We are hoping and praying that she is 100% donor.  So keep those prayers going.  Prior to us leaving the hospital, Kelly lifted her heavy suitcase, which caused her back to hurt.  We are sure she pulled something and she's icing it now.  If it's not one thing, it's another.  

Friday, June 10, 2005 (Day 99) - The pain became unbearable to Kelly yesterday so she was admitted to Mott Children's Hospital.  The pediatric BMT doctors are the reason for her being in Mott.  They plan to do an endoscopy and colonoscopy (sp).  This depends on when they can get into the GI doctor's schedule.  She will be put to sleep for these procedures.  Since tomorrow is Day 100, we asked if the bone marrow biopsy will be done during this hospital stay.  Dr. Chou said they will do the bone marrow biopsy while she's asleep for the GI procedures.  This is great!  So, they are beginning to treat her for GVHD of the intestine.  She will not be able to eat for the next two days.  Only ice chips and hydration through IV.  They will up the steroids.  If the GI tests come back negative, they will taper the steroids sooner then if it comes back positive.  

Monday, June 6, 2005 (Day 96) - Last Thursday Kelly did not need platelets again.  On Friday we had a small family celebration for Kelly's 25th birthday and Amy's graduation at Univ. of Michigan at our house.  Unfortunately, this was the day that our air conditioner decided to break down and we had one of the hottest weekends ever in June.  Yesterday, I think they said it went up to 90 degrees.  HOT!  But this weekend Kelly was having a difficult time with her stomach and the BK virus.  She felt like it wasn't just the BK virus and was definitely something wrong with her stomach.  She also had a rash beginning to appear around her neck, on her back and on her arms.  Her temperature went up to 99.3 so we called the on-call doctor.  The doctor recommended to wait until her visit to the clinic today rather then go to the hospital.  

Today, Kelly started with the physical examinations that she had before the stem cell transplant.  The MUGA and pulmonary test were done this morning and then she went to clinic.  We saw Dr. Chol first and then she asked Dr. Hutchison to take a look at Kelly.  He definitely feels that the GVHD (Graft vs. Host Disease) is flaring up again so he increase her Medrol (steroids) and her GVHD medication (cyclosporine).  He said he was on the fence as to whether to admit her or not.  He stated a few times the things that we are to watch for and told Kelly that if she begins to feel things getting worse, to call and she would have to be admitted.  She was very tired when she got home and went to bed until just now.  Hopefully, the medication increase will do the job quickly and she won't have to be admitted.  She goes back to the doctor on Wednesday.  Her platelets were at 20 so she did not receive a transfusion.  Her white blood count and neutriphil went down so he wants her to take a Neupagin shot today and tomorrow.  

Ernest, Kelly's grandpa, is progressing well after having his triple bypass surgery this past Thursday.  He's actually doing physical therapy exercises and may go to a rehabilitation center for a few days before going home.  The doctors have told him he's doing much better then they thought he would do.  This is good news.

Tuesday, May 31, 2005 (Day 90) - Great News!  Kelly DID NOT need a platelet transfusion today.  Her count was 23.  She was only there an hour.  This is a first since her transplant. She has been walking more and trying to do physical therapy exercises to get some muscle back in her legs especially.  

We found out today that Dave's Dad (Ernest) has to have heart bypass surgery.  Right now it is scheduled for Thursday.  Our thoughts and prayers are with him and Audrey.  

Sunday, May 29, 2005 (Day 88) - The first news to report is that Kelly's grandfather (Dave's Dad) had a heart attack on Friday.  He is in St. Vincent Mercy Medical Center in Toledo.  Audrey (Kelly's grandmother) first took him to Monroe and they ambulanced him to the hospital in Toledo.  We heard yesterday that he was in intensive care and is stable.  Thank goodness and thank you to Mike and Linda for being with them through this traumatic event.  

Kelly's clinic visit on Thursday was routine.  I believe most of her visit are becoming pretty routine these days, thank goodness.  Dr. Levine told her she's doing very well.  The BK Virus is still a problem but that won't improve until she is off some of the immune-suppressant drugs.  Her platelets continue to be low (count was 17) and on Thursday they decided to transfuse her on Friday because of the holiday weekend.  Since we were on the subject of the holiday weekend, I asked when we might be able to go up north.  Dr. Levine said probably by the end of the summer, when she no longer needs transfusion, but she would have to avoid lakes, wood piles, sun, etc., so that is everything about being up north.  Therefore, we will NOT take our chances and will stay away from these types of places for at least another year to see what he says then.  He said the best hospital to go to in an emergency situation when up north would be Traverse City.  

It breaks my heart that Kelly has to go through all of this.  She is now 25 years old and should be having the time of her life.  Instead she has a daily regimen to go through and does what she has to do to get through the day.  Many times she has to deal with stomach aches and headaches that cause her to take medication that puts her to sleep.  Whatever different thing that comes along during a day, she seems to enjoy.  We just bought a family plan through Verizon wireless and she has been fiddling around with her phone for a few days now saying some of the options are so cool.  One option is she can state the name of a person in her contact list and the phone will dial that person.  What fun!  Yesterday, Larry (my brother) brought dinner from Damons and brought a gifts for Kelly.  He also gave Kelly some tips on meditation.  We enjoyed his visit.  Amy stopped by today to have breakfast, which we enjoyed as well.

Monday, May 23, 2005 (Day 82) – Yesterday, Kelly turned 25 years old.  She received many phone calls wishing her a Happy Birthday.  We had a very nice weekend.  With the weather cooperating on Saturday, Kelly and I went garaging and shopping until about 5:00.  She decided that she wants to begin sleeping in the basement again so we spent Sunday cleaning.  We plan to use the walkie talkies to communicate if something should come up during the night.  She packed the ice packs in a small cooler and put that by her bed because almost every night she wakes up with her knees and/or ankles aching so the ice helps. 

Her visit to the clinic today went very fast.  She did need a platelet transfusion.  They reduced her steroids down to 32 mg. 

Friday, May 20, 2005 (Day 79) – This week has been pretty much the same as other weeks.  Kelly went to clinic on Monday and needed platelets and then she went yesterday.  Her platelets were up to 16 but they didn’t want her to go over the weekend without them so she did get a transfusion of platelets yesterday.  She also received a breathing treatment and the medication for the BK virus.  Most of the time it is still her legs that ache and give her problems.  Occasionally, her stomach will bother her but she’s been trying to monitor that with what she eats.  Her sugar has been all over the place so it’s difficult to regulate.  She’s starting to try to back off of the carbs to see if that makes a difference. 

Sat, May 14, 2005 (Day 72) - Kelly had an appointment at the clinic yesterday just to see if she needed platelets.  Her platelets were 10 so she needed a transfusion.  In the lobby we saw Leonard Garcia and his wife.  He had a transplant from his sister for lymphoma.  He seems to be doing fine.  Sounds like the same type of things that we are going through.  Dr. Yanik stopped by to say hello and take a look at her hands for GVHD.  We also saw Irene, which was nice.  We told her how much we miss her and Dr. Erba.  She told Kelly that she is looking good.

Many people have asked what is BK Virus, which I thought I kind of explained in the journal but I maybe didn't refer to my description as the BK Virus.  It's a virus that normally lurks within the urinary system without causing problems in healthy individuals but can in immunosuppress individuals.  Kelly's symptoms were pain when urinating (like razor blades) and passing blood and tissue from the urinary tract.  It's very painful and takes a long time to run it's course.

Weds, May 11, 2005 (Day 69) - One thing about going to clinic you come home exhausted.  Why?  Can't tell you because you're basically sitting around waiting.  Dave and Kelly came home and took naps.  They did not give Kelly platelets today.  Her count was at 18, which is higher then we normally see.  The doctor said something about her red blood cells looking larger under the microscope so they will be watching them.  We learned on Monday (I forgot to write it down though) that Kelly will be losing her finger nails.  The doctor said it is caused by the chemo and radiation and as the new nails will grow in and the old will fall off.  We were not aware of this.  The doctor gave her a Z-pack because she has a raspy cough but no temperature so far.  She received the IV for the BK virus today.  She returns to clinic on Friday to see if she needs platelets.

Mon, May 9, 2005 (Day 67) - Mother's Day was the best!  Kelly made our favorite lasagna (I was the coach) and she tried a new recipe for banana pudding.  The food was delicious and even better because Kelly made it.  Amy stopped by later in the evening and the girls and I took a walk together around the neighborhood.  Dave was away for the weekend.  Both girls gave me heartwarming cards.  Inside Kelly's card was a picture of a Claddaugh ring with a sapphire stone.  The Claddaugh is an Irish Promise ring that dates back over 100 years and is described many ways but it has 3 lucky meanings - Faith, Friendship and Love.  For love, we wear the heart. In friendship, we wear the hands. And, in lfaith we wear the Royal Claddagh crown.  The ring worn on the right hand, with crown and heart facing out, tells that the wearer's heart is yet to be won. While under love's spell it is worn with heart and crown facing inwards. Wearing the ring on the left hand, with the crown and heart facing inwards, signifies that your love has been requited. Today, Kelly and I arrived home from the clinic visit to find that the postman attempted delivery of the ring and left the "stop by the post office" notice"  Kelly was so disappointed that we missed the mail so we went around the neighborhood looking for the postman.  We found him and got the ring.  It's a perfect fit and beautiful!  I'll cherish it forever.

At clinic we saw Dr. Chao (female).  She explained things thoroughly and had a conversation with Kelly as to what she was doing when she was diagnosed and what she plans to do when she makes it through all of this.  She was very nice.  Kelly's platelets were 12 so she did get a transfusion of platelets.  She is testing positive (and has the symptoms for the BK virus) so she will begin the Cidofivir medication through IV again on Wednesday.  Kelly's hands and legs have been cramping up a lot lately so she prescribed a medicine that is suppose to help.  She also is cutting back the Cellcept this visit.  

Kelly had 2 nose bleeds this past weekend - both times she blew her nose and blood clots came out.  The PA today told her she's not suppose to be blowing her nose when her platelets are low.  Kelly thought of the Deep Sea drops that were prescribed in the hospital.  The drops really helped to lubricate her nostrils and give her some relief.  Kelly wanted to attend an imaging seminar that was being offer this Thursday but she called and they cancelled the session.  She plans to attend on June 9.  

Fri, May 6, 2005 (Day 64) - A little after midnight on Thurs, Amy arrived home from the Team in Training run in Vancouver, British Columbia.  She said she ran better then she thought she would.  She ran the half marathon in one hour and 51 minutes.  She said about half way through she was struggling but then she thought of Kelly and all the spinal taps and everything else she has been through.  At that point she said to herself, "I can do this."  I told her that was nice she thought of Kelly during the run.  Amy said, "I think of Kelly all the time, especially while I was training."   We are very proud of her for taking on the challenge and finishing it.  All in all, I believe it was a nice trip for Amy and one she'll remember all her life.  

Kelly goes for blood draw today and most likely a transfusion of platelets.  She is getting red spots all over her legs called piticceai (I don't know how to spell it).  She also goes to clinic for the next doctor visit on Monday.

Wed, May 4, 2005 (Day 62) - Things really settled down compared to last Friday.  On Sunday, Kelly had to go to 8A for a blood draw to see if she needed platelets again.  We had a pleasant surprise in that her other counts went up so no neupagin required.  Her platelets were at 16 and the nurse had orders to transfuse if the count was 15 or below.  She checked with the doctor on the floor and he decided to have her get platelets because she wasn't scheduled to go to clinic until today.

She saw the pediatric team for the first time and both she and Dave were happy with the visit.  The doctor today said he was very interested in Kelly because he was the one that wrote up her original protocol for the SCT.  Dave said he would explain things without having to be asked.  Her platelet count was again 16 but the doctor decided not to transfuse today just to see what her counts will do.  She goes in on Friday for a blood draw and transfusion, if necessary, and goes to clinic again on Monday.  She definitely has symptoms of the BK virus again.  Hopefully, it won't be as bad this time.  

Fri, April 29, 2005 (Day 57) - This morning at approx. 7 a.m. we made our first call to 911.  Kelly woke up having severe chest pain and difficulty breathing.  Around 3 am she was having chest pains but took Nexium, Tums and ate a banana and started feeling better.  These chest pains are nothing new because she has had indigestion problems for a while since being diagnosed.  When she said call 911, I knew the pains were more severe so I immediately called..  Her blood pressure with the wrist blood pressure monitor was 162/119.  EMS were here within 5 minutes - 2 big fire trucks and an ambulance.  They immediately put her on oxygen because her intake was only at 62 (I believe).  They did an EKG and it was okay but still wanted to take her in to emergency in case there was something else going on besides the indigestion.  Her blood pressure at the hospital remained high until they gave her hydration and pain medication.  The doctor noticed she looked very dehydrated when she arrived.  The diagnosis was a bad case of indigestion and they gave us tips on how to prevent such episodes in the future.  They also strongly urged us to approach the BMT doctor about changing Nexium to something else since it's not working.  The nurse she had started looking up some of the medications that Kelly is on and he said they all are very strong and many have a side effect of chest pain so that's most likely part of the problem as well.  We finally made it home around 2 pm and we all went to sleep.  The episode wore us all out.

On a happier note, Amy just called from the Vancouver airport (5:15 pm) for the Team in Training weekend.  She was standing in a long line going through customs.  We are so proud of her taking on the challenge and will now be completing it in honor of Kelly, Jill and many other people that suffer with blood cancers.  We'll be thinking of her all weekend.  Thanks, once again, for everyone's support.

Thurs, April 28, 2005 (Day 56) - Kelly went to clinic on Monday and needed platelets.  Her magnesium level was normal so she doesn't have to do the IV magnesium for the time being, just the supplements.  We talked with Kim, our BMT coordinator, about being switched to seeing the pediatric BMT doctors, which is something that Kelly was suppose to do in the very beginning.  She asked that Kelly draft a letter stating her concerns and she's sure there won't be a problem.

Today, Kelly was scheduled for clinic.  She gave Kim the letter and she said they already talked about it and she's being moved to seeing the pediatric BMT doctors.  Her blood work today was low, not just her platelets but all of her counts.  They want her to take neupagin shots if her count is less than or equal to 1.  Her platelet count was 13 so she's there right now getting a platelet transfusion and her level is high again for the BK virus even though she is showing now systems right now.  They are also concerned about the whiteness of her tongue so they are testing for a fungus.  

During the middle of the night Kelly woke up with her knees and ankles in pain.  Poor girl can hardly walk when she's having this pain.  So off I go to get ice packs and she takes pain medication to get it under control.  She also woke up this morning with chest pain and starts taking Tums and Pfazyme to get that to eventually go away.  Yesterday, she met with the professor of her Art History class in his office.  He agreed to do that so she could view the slides by herself.  She had to climb multiple flights of stairs because the building has no elevator so this could have irritated her legs and caused them to hurt.  The professor is giving her an A- in the class.  She was very proud to get this behind her.  Now she still has an art project for one class and an html class to finish but those professors have extended the due date for her.  Thank goodness they are understanding.  

Sat, April 23, 2005 (Day 51) - Yeah, Kelly is at the half mark of 100 days.  The results of her biopsy came back and she is 95% donor, which is good news.  Her platelets were low again so she had to get a platelet transfusion yesterday and the IVIG transfusion for the BK virus.  The dropped her steroid dosage to 36 mg twice a day.  She returns to clinic on Monday.

Weds, April 20, 2005 (Day 48) – Kelly had a very good clinic visit yesterday.  Her platelet count was 20 so she didn’t have to get a platelet transfusion.  Her magnesium level was at the low end of normal so they are stopping the magnesium IV for the time being.  She just has to take the Slow-Mag supplements.  This saves her 6 hours of being tied down to an IV pole so this is good.  She ran into Dr. Yanik in the waiting room.  Dave said they see him almost every time they go to clinic and he comes over and gives Kelly a hug every time.  He said he was going to see if her bone marrow biopsy results came in.  They haven’t come in yet, and the more I think about it, perhaps it’s a longer process going through the bone marrow doctors because they might be checking donor levels in her blood.  We will be patient.  But it was a very good visit yesterday and a record.  They were only there 2 hours. 

Kelly and I walked around the new high school on Sunday and Monday.  We took Nikka.  It was great letting her run off some of her energy in the open fields.  On Sunday, Kelly got the urge to do a short jog, took two steps and fell to the ground, scraping her knees.  Ouch!  This was not good with her platelets being so low.  She says her leg muscles are like mush and this is why she fell.  

She had an appointment today at the Kellogg Eye Clinic to re-check her vision.  The doctor said they watch their eyes pretty closely because as they are weaned off GVHD medications things can happen.  She has to go back in 2 months. 

Mon, April 18, 2005 (Day 46) – Yesterday, Kelly had an appointment at 8 a.m. at the infusion room on 8A.  This was the first time we ever had to go to 8A infusion.  She needed platelets – her count was 15.  Since her magnesium level was above normal, they are having her stop the magnesium by IV until she returns to clinic on Tuesday.  She still has to take the Slow-Mag supplement pills.  Kelly felt pretty good yesterday but Saturday was a bad day for her.  She was experiencing a lot of pain in her knees and ankles – they are swollen.  We switched the magnesium IV on Friday night so that she is doing the infusion at night while sleeping over an 8-hour period.  It seems to have helped on Sunday but we are also trying to manage her pain medications better.  Taking them at a certain time around the clock rather than waiting until she feels the pain.  It’s been working.  We stopped by to see Diana Fox on our way out of the hospital.  Diana has AML and is scheduled to get her bone marrow transplant on Wednesday.  We wish her the best of luck.  In the evening, we took a walk around the new Saline High School.  It was a very pleasant day.  I’m glad Kelly was feeling better and hope the feeling good continues. 

We missed Chandra Mytych’s bridal shower.  I heard it was one of the biggest ever and it was very nice.  Chandra said something about Kelly because she wanted her to stand up in her wedding.  I guess it was emotional for some.  Thanks, Chandra, for caring so much about Kelly and being a good friend.  We are hopeful that everything will be going well by the time you and Jason wed in June.

Sat, April 16, 2005 (Day 44) - Yesterday morning Kelly woke up with swollen knees and ankles that were so bad that she could hardly walk.  She had to go to clinic at 8:00 a.m. so Dave put her in a wheelchair to get around.  The doctors acknowledged her being swollen and in pain but said the pain medications they prescribed should help.  They went ahead and gave her a bone marrow biopsy because of her platelets continuing to be low.  Her count was 17 yesterday and she has to go to 8As infusion room tomorrow morning at 8:00 to get platelets again.  Kelly and Dave  were at the clinic yesterday from 8 am to 6 pm.  After the bone marrow biopsy she had to go to Med Inn to get the IVIG.  They closed at 4:30 so she had to go back to the Cancer Center infusion room for platelets.  A long, long day.  While Anne Winter, the physician's assistant, was giving her the bone marrow biopsy, Irene came in and asked if Kelly wanted her to do it (jokingly).  Irene knows that we have preferred and actually requested her to do spinals and bone marrow biopsies on Kelly.  Kelly said that Anne did a good job though.  We have been hoping to run into Dr. Erba and Irene at clinic but this was the first time Kelly had seen Irene.  Another way we miss Dr. Erba is that the bone marrow team said it would take a week to get the biopsy results.  With Dr. Erba, he would take a look at the specimens right away and almost always give us a call the next day to let us know the results.  We see now that Dr. Erba spoiled us.  He was Kelly's hematology oncologist and now Kelly is strictly seeing bone marrow transplant doctors so we miss Dr. Erba.  Pray that the biopsy results come back okay.  

Thurs, April 14, 2005 (Day 42) – Kelly visited the clinic again yesterday and had to get platelets again because they were low.  The doctors seem concerned that her platelets continue to be low so they mentioned doing a bone marrow biopsy on Friday, which scares us because she is not suppose to have one until Day 100.  But two doctors when she was last in the hospital told us that her counts would go down.  So we are a little confused.  The doctors also stopped and reduced some of her meds that they think could be affecting her platelet count.  On Friday, Kelly wants to ask if there is a problem with waiting another week for the biopsy.  We’ll see what they say.  They told her to stop taking the blood pressure medication and gave her a prescription for a blood pressure cuff.  We stopped by MedEquip with the prescription but they said her insurances would not cover a cuff.  So off we go to CVS and bought one like her grandmother has that goes around the wrist.  She’s planning to take it to clinic tomorrow and take her pressure after they take it to see how closely it reads

Tues, April 12, 2005 (Day 40) – Kelly had a bad night.  Her legs were very achy – she says it was the worst she has felt thus far.  She went to clinic yesterday and saw a new doctor.  She needed a platelet transfusion so they were there all day.  As mentioned before, Kelly has to take insulin when her level is above 150 so she’s been checking it prior to eating meals and would have to give herself an insulin shot.  Yesterday, the physician’s assistant decided to change the insulin to 10 units once a day.  Before she ate dinner last night, Kelly checked her insulin and it was 133 so she was concerned that it was getting too low.  We’ll have to check this out with the doctor tomorrow.  She has to return to clinic again on Wednesday and Friday this week.  They also put her on a blood pressure pill yesterday because it’s been high, about 145/100.  We think the blood pressure pill may have contributed to Kelly’s joint pain during the night because it was a side effect. 

Fri, April 8, 2005 (Day 35) - Kelly at this moment is at the clinic (3:00 pm).  She and Dave have been there since 8 am.  Her infusion medication had to thaw so they had to wait, and wait, and wait.  Dave even came home, made them some lunch, and went back.  When you go to clinic, it's an all day affair.  Everything is pretty much the same. The doctor reduced her steroid medication to 48 mg twice/day.   We can't wait for that BK virus to "run its course" because it is very painful for Kelly.  The doctor assures us it will end.  I hope and pray it ends soon!

I want to extend my most heartfelt thanks to Ruth Blum.  Yesterday, Amy told me that she ran her own fundraiser and prayer requests for Kelly where she works.  She raised over $500 towards Amy's Team in Training goal.  Ruth's daughter, her name is Amy also, ran with my Amy on the high school cross country and track teams.  They were a part of a great 4x800 relay on the track team and I understand that Ruth even has a picture of them on her desk.  I cannot express how much this means to me.  Someone that I have not seen for 5 years (with the exception of maybe running into at Buschs a time or two) comes through with this wonderful gesture of kindness.  It is truly amazing the friendships you make over the years that you find are still there during times like this.  Thank you from the bottom of my heart, Ruth!  

Weds, April 6, 2005 (Day 34) - GOOD NEWS!  We are HOME!!  The past couple of days have been pretty much the same for Kelly.  Her skin rash is looking better every day but the pain in her legs continues so they control that with meds.  Yesterday, they started changing her pain meds over to oral dispensing with the hope that she could go home and visit the clinic on Friday morning.  The steroids along with the Atgam medication have caused her blood pressure to elevate.  She has been having readings of 143/92, for example.  Within an hour of us arriving home Home Med was at our door with supplies and the visiting nurse was here to show Kelly how to check her sugar level and to give herself insulin if needed.  When her insulin level is above 150, she has to give herself insulin shots.  The past few days her insulin level was well over 150 - in the 250 range - so she was getting insulin.  Again, they say this is from the steroids and is only temporary (thank goodness).  The BK Virus is still hanging around.  The doctor says it is common with bone marrow transplant and just takes time.  Kelly came home with another regimen of medications that she has to organize to take when she is suppose to.  I really don't know how she keeps up with all the medications that she has to take around the clock.  

Kelly corrected me on the amount of steroids that I noted in the last journal entry.  She actually takes 60 mg of prednisone twice a day so that's 120 mg.  Hopefully, they will begin tapering her off of these soon.  We walked last night for an hour even though Kelly's legs were still hurting her.  She's a real trooper.

Amy received an E-mail from her Team In Training Coordinator Colleen Burke that was sent to the entire team.  She was announcing a training session taking place this weekend at Kensington to all the team members.  Her E-mail included a very nice paragraph about Kelly that I've included below.   

**********************

MISSION MOMENT
Below is a link to a website that chronicles the story of Kelly's battle with Acute Lymphocytic Leukemia. Kelly has been struggling with ALL for the past two years.  She had been in remission for about a year when she and her sister Amy decided to do a TNT event.  Amy will be going to Vancouver in Kelly's honor. Kelly will be there in spirit supporting everyone. Kelly relapsed in November and started receiving stem cells on March 3rd; everything is day to day, from her website things look promising. I encourage you to take a look at the website and you will see exactly why we are fighting these cancers.

***********************

We thank each and every Team In Training member for their dedication to raise money for this cause.  We also thank our family, friends and members of our community that donated money towards Amy's Team In Training fundraising.  She raised over $4,000 thanks to all of you. 

Sun, April 3, 2005 (Day 31) - Kelly's skin on her face and chest looked much better today.  She still runs a low grade fever from time-to-time.  Her blood pressure was up today - 143/92.  The doctor said steroids can cause this, which she is still on the max for her body weight - 60 mg.  The name of the medication she began yesterday and gets for four days total (Tuesday is the last day) is Atgam.  The doctor also put through an order for her to get a pump to administer her pain medication.  She had this during the last visit, which was the actual transplant. 

Kelly's humor came through today when we decided to play Sequence.  She took the two ice packs given to her by the nurses and tied them around her neck and arms.  She then took pictures with her cellphone.  I wanted her to send them to me to post on the website but she wouldn't.  She's so funny sometimes. She really has a great sense of humor.

Kelly bought me and Dave a George Foreman grill that was delivered this week.  Dave dropped the one we had previously and broke it.  He was busy cooking sausage and burgers on the grill today and brought them to the hospital for us to enjoy.  Amy was there at the time so we were able to enjoy a family dinner together in Kelly's hospital room.  

We are so very proud of Amy.  She took her teaching certification test yesterday.  She said it lasted 10 hours.  She will fulfill her student teaching commitment during Fall 2005.  Right now she plans to begin advertising her availability to  tutor, which she has already been doing.at the Family Learning Center at U/M.  Please contact her or us if you know of someone needing a good tutor.    

Sat, April 2, 2005 (Day 30) - I visited first this morning around 10:30 a.m.  Kelly's skin looked better then yesterday so it looks like the steroids are responding.  She slept a lot until about 3:00 p.m.  Then she ate and we watched the newly-released Bridget Jones movie that made us laugh several times (we both liked the movie).  The doctor visited today around 12.  He has her on 60 mg of steroids, which is the max for her weight.  He wants to start a new medication that I can't remember the name right now (abgar, amgar, something like that, I'll find out tomorrow - couldn't come up with nothing through a search on Google).  It has something to do with the T-cells.  She will get this drug today and the next 3 days so she is in the hospital at least through Tuesday.  He said they have to back off the steroids because of side effects.  Her temperature and blood pressure began to rise by the time I left today (Dave came by at 6 pm).  It was 100.3 and 141/92, respectively.  But she was beginning to have a lot of joint pain by this time, which can explain the elevated blood pressure.  Keep praying that the only GVHD she experiences is the skin rash.  We DO NOT want this hitting any of her organs.  Thanks for all the prayers and good wishes.  

My sister Ruth and her son Austin sent me a thank you note to send on their behalf to the donor.  If you want to send a thank you card to the donor, please send it to me at kathysh@umich.edu and I'll buy a card and sign it in your honor.  Remember, you cannot provide any personal information so keep it general.  I'm sure he will appreciate it.

Friday, April 1, 2005 (Day 29) - The GVHD has spread more on Kelly's body.  The doctor upped the steroid dosage again.  Kelly felt pretty good most of the day.  She was annoyed by the itching of the rash on her body.  She puts ice packs under her chin because that is where the rash is the worst.  She says it helps relieve the itching.  She is now on 60 mg of prednisone.  No word on when she will be able to return home.  She did not have a fever today, which is great.

Thurs, March 31, 2005 (Day 28) - It was a rough day for Kelly.  Every time she would get out of bed to go to the bathroom she would throw up.  She has been used to getting medicine when she is nauseated but for some reason she's only getting Ativan every 4-6 hours.  We were under the impression that they don't like her to be vomiting but they did not order any other medicine for nausea.  She thinks it was her bad headache that was making her throw up.  

By the time I arrived around 5:15, Kelly was beginning to eat.  Around 9 p.m. her nurse came in with results of the biopsy to confirm that the rash Kelly has is Graft vs. Host Disease so the doctor upped her steroid medication.  If the GVHD stays confined to a skin rash, this will be good.  We DO NOT want it to start attacking any organs so the doctors have to stay on top of the GVHD thing.  The CT Scan she had was negative, which was good news.  I hope Kelly has a better day.

Weds, March 30, 2005 (Day 27) – On Monday night at about 11:30 p.m., Kelly’s temperature went up to 100.6.  She called the on-call doctor who, of course, told her to go to the emergency room.  As she and Dave were driving to the hospital, Kelly said she was praying to God to protect her.  When Kelly arrived home at 4:30 a.m., she said to me, “Prayer works.”  She said her temperature once she arrived at the hospital was 99 point something and never went above 99.  She so did not want to be admitted to the hospital.  They had to return to the BMT clinic at 8:00 to see the doctor.  He feels that one of the antibiotics she is on (Augmentin) may be causing the elevated temperature and told her if it happens again she should stop taking it and switch to Levoquin.  They sent Kelly for more blood work before she left the hospital to test for different viruses.  She felt good most of the day yesterday. 

This morning she woke up in extreme pain in her pelvic area.  She was crying and when she cries, I know the pain has reached an unbearable point.  She called the on-call doctor and she suggested waiting until the clinic opens.  However, since she cannot measure her pain, she told her to go to the ER if she felt she couldn't wait.  Kelly decided to wait to hear from the clinic.  She went in to the clinic and was admitted to the hospital.  She developed a fever of 102 and broke out in a rash on her face and upper torso.  She was still experiencing excruciating pain.  When I left the hospital tonight at 9:00, they still had not come to take her for a CT scan of her pelvic area.  She had to drink two concoctions and could not eat.  The only thing she's eaten today is a bagel.  So I hope they come soon so she can eat.  

Kelly is in unit 8A, Room 109.  Her phone number is 936-8109.  If you want to call her, please do so after noon.  She seems to sleep in late mornings and wakes up around noon.  

Mon, March 28, 2005 (Day 25) - We had a very nice weekend that included eating Easter dinner together at the dinner table.  This is a rare occurrence in our household these days.  So it was very, very nice.  Kelly has an appointment with the doctor tomorrow morning.  We will see what her magnesium level is to see if she can stop getting it by IV since she is started taking supplements. 

Fri, March 25, 2005 (Day 22) - Kelly and Dave got up very early today to make their 7:00 a.m. appointment.  Kelly's blood counts were good.  Hooray!!!  But her magnesium level was low so they want her to get a magnesium IV bag every day this weekend.  So when she came home she sat for 4 hours and she'll have to sit for 4 hours on Sat & Sun.  But that's okay.  We can handle that.  She will also have to take Slow-Mag pills 3 times/day.  I have never heard of these supplements before.  She's also going to be on Calcium Citrate + D.  We are happy to see the addition of calcium supplements because Jill (the young lady that Kelly met at her first youth support group meeting).  Jill had a transplant over a year ago and warned us about the need for calcium.  Thanks, Jill.  We think of you often and hope you are progressing well with your transplant.  

We gave Kim Kyro, our bone marrow transplant coordinator, our first thank you cards to the donor.  We were surprised to hear that not many people correspond with the donors so she was happy to see the cards.  If anyone would like to send a thank you to the donor, please let me know by sending an email to kathysh@umich.edu along with your message.   I will be happy to send a card to the donor on your behalf.  Your message cannot contain any personal information so keep it general, i.e., express why his donating stem cells to Kelly means so much to you.  

Thurs, March 24, 2005 (Day 21) - More of the same.  Kelly is feeling good.  She has a appointment tomorrow morning at the bone marrow clinic at 7:00 a.m.  They will have to rise and shine.  

Wednesday, March 23, 2005 (Day 20) - Kelly is doing very well.  She will have her last antibiotic IV tonight at midnight.  She goes to the doctor on Friday at 7:00 a.m. for her next checkup.  Hopefully, every will still be moving along positively.  Dave is still doing a great job at being a caregiver. 

Tuesday, March 22, 2005 (Day 19) - First day at home went well.  Kelly is much more active at home.  Much better then laying in a hospital bed trying to get through the pain.  At least when she's at home she can move around from time-to-time and do things she likes to do like catch up on E-mail.  She said she had over 100 E-mail messages.  She's been laying on the couch reading them tonight.  Dave has been doing really great with giving Kelly her antibiotics through IV every 6 hours.  They are just right for each other.  Dave is used to working midnights and Kelly is a night owl.  She needed her antibiotic by IV at 1:00 a.m.  When that was done, Kelly and Dave spent most of the night watching Johnny Carson DVDs that Kelly bought her Dad for his birthday.  They had to rise early at 6:00 a.m. to get the next antibiotic IV.  Dave then cooked Kelly breakfast and off they went to the clinic.  The visit to the clinic this morning at 8:00 a.m. went well.  She has to return to clinic on Friday to get a medication in the infusion room.  

Monday, March 21, 2005 (Day 18) - Good News!!!  We are home.  Arrived about 5:00 p.m.  Kelly has to take medications around the clock during the day and take an antibiotic intravenously every 6 hours.  A Michigan Visiting Nurse stopped by the house to make sure we were okay with administering the medicine.  Kelly has an appointment tomorrow morning at 8:00 a.m. for blood draw and 8:30 at the bone marrow clinic.  So a big step to come home.  Leigh, the nurse's practitioner, walked up to me after going over all of the medications and talking with Kelly privately and said, "You have a wonderful daughter.  She is so tough."  I couldn't agree more.  She ended by saying she likes Kelly a lot.  

Sat, March 19, 2005 (Day 16) - Kelly's legs are still aching but the doctors are cutting her back on the pain medications.  We walked yesterday a mile - 17 times around the unit - for about 30 minutes.  All things point to her coming home tomorrow because they have prescriptions posted in her room and they gave us a discharge folder that says a visiting nurse will be stopping by our house Sunday p.m.  We'll have to see what tomorrow brings.

Fri, March 18, 2005 (Day 15) - We are keeping track of the days because the first 100 are critical.  Kelly's legs have gotten a little bit better but still hurt her.  Dave and I were trained on how to give Kelly IV medication and hydration at home.  I asked when she was coming home but Home Med didn't know.  They just wanted to get us trained in case she was sent home over the weekend.  If she does come home, we have to give her an antibiotic every 6 hours around the clock by IV and hydration every other day, which is a 4 hour IV.  Her blood counts are still holding steady.  In fact, today her white blood cells and ANC went down slightly and her other counts (platelets, hemoglobin & HMT) all went up slightly.  

Thurs, March 17, 2005 (Day 14) - I'm getting the days mixed up so going to start listing the day.  Today was much like yesterday.  Legs very achy.  The doctor went back to giving her more pain medication for relief.  She doesn't have any taste buds so eating is not appealing.  But we have to get her moving and eating.  We finally walked at 10 p.m. for a half hour.  I bought her an electric blanket (Lesley's suggestion) since the nurse's warmed towels felt better for Kelly.  

March 16, 2005 (Day 13) – Kelly’s rash has pretty much disappeared. She is beginning to look like herself again. The doctor said if she will start moving around more and eating more, she would be able to go home this weekend. Kelly’s legs were aching a lot yesterday. Katie, her very nice nurse, made some heating pads and that provided her with some relief. It was difficult to get her moving but once she did step out of the room she wanted to walk for a half hour. Then after walking she felt like eating. This was at 10 o’clock at night. She’s getting back on her midnight schedule. True signs of Kelly coming back after being in a fog for several days. 

March 15, 2005 (Day 12) - Absolutely great news.  Kelly's white blood cell count jumped up to 7 and her neutrophil count was 6 today.  Her other counts are holding steady.  She has to be feeling much better today.  She can now sleep without being in pain.  The rash is disappearing and her face is a normal color today.  Her hands are itching her a lot, which the doctor said is probably graft vs. host.  The doctor said he is going to back off of the steroids and she might be able to go home next week.  

March 14, 2005 (Day 11) – Kelly’s counts are going up.  Her white count went from 0.6 to 2.0.  Maybe she will start feeling better and healing some of the things gone wrong with her body.  The swelling in her legs has gone down also.  She was able to sleep because her pain is not as bad today.  When I arrived, Kelly was complaining of back and leg pain and a headache.  The med they gave her for the headache worked.  Later, I convinced her to walk around the unit one time.  Once we got started, she set 5 times around as her goal.  She said the walking helped relieve the pain in her legs.  Dr. Yanik requested that a neurologist see Kelly about her headaches.  The doctor stopped by around 8:00.  Dr. Yanik stopped in while the neurologist was there.  He told me that he just wants Kelly to get better.  They plan to have the attending neurologist stop by to see Kelly tomorrow.  Dr. Yanik went to the library and picked up 3 cassette tapes for her on meditation.  I asked him about the doctors rotating every 2 weeks and he said another doctor would be coming on Wednesday.  We were hoping that he was going to be Kelly’s transplant doctor forever.  He said the doctor coming on is great.  I can see why they rotate because Dr. Yanik seems to be there all the time.  For us, Dr. Yanik’s shoes will be hard to fill.

 March 13, 2005 (Day 10) – Kelly experienced a lot of pain today and was very uncomfortable.  She said it felt just like the pain when she’s had multiple neupagin shots.  She also experienced chest pain yesterday so they took another EKG and chest x-ray just to be safe.  Her blood pressure rose slightly but that was because of her pain. 

March 13, 2005 (Day 10) - Kelly and Jenny had an uneventful night with the exception of her throwing up once.  I'll post more info later as to how the day proceeded.  I had yesterday's entry date wrong so the next section is new to the journal.

March 12, 2005 (Day 9) - When I arrived to Kelly's room today, the physician assistant and nurse were hovering over her taking blood pressures.  They had given Kelly a shot of Imitrex for her headache and she immediately started having chest pains.  Her blood pressure rose to 170/100.  She had all the signs of a heart attack.  Shortness of breath, heavy feeling on her chest, chest pains, pains all down her spine.  The doctor came in and ordered an EKG and chest x-ray in her room.  He listened to her heart and lungs and said they sounded good.  He ordered medications to get her blood pressure down.  He said Kelly was feeling all these things because her blood pressure was so high and once they get her pressure down, she would begin to feel better.  He was ready to move her to the cardiology floor to be watched overnight but then her blood pressure started going down and all of the stat tests he ran were coming back normal so he changed his mind.  After about an hour or so, Kelly began to feel better and we felt less stressed.  The ironic thing is that her headache did get better.  Let me tell you... we thought Kelly going through the chemotherapy protocol was bad, that was nothing compared to this transplant process.  It can change hourly and is very scary.  

Dr. Yanik stopped by later and Kelly told him he was the best doctor she has ever had (since we feel this way about Dr. Erba, we are so thankful Kelly has such wonderful doctors)..  Dr. Yanik sat down at the end of her bed and asked her what she wanted to do with her life once she got back to normal.  She talked for about 15 minutes saying she wants to take a month vacation to do some traveling and then move to California to go to the Art Institute for graphic design.  He said to let him know when she is ready to do that and he would call the institute for her.  What he exactly meant by that, we don't know but we do know that he cares a lot about Kelly.  I'm sure he is this way with all his patients.  Dr. Yanik is awesome!  

Jenny, Scott and Sara visited later on in the evening and Jenny ended up spending the night with Kelly.  Hope they have an uneventful sleepover.  

March 11, 2005 (Day 8) - It is so difficult, as a parent, to see your child going through this transplant ordeal.  Kelly is covered with a rash that looks much like measles, except the red blemishes are much larger and literally cover her entire body.  Her legs and ankles are swollen.  She has dark brown spots in various parts of her body that we've been told are due to radiation.  She is in a lot of pain but the doctors try to control it with medication.  As a parent though, you feel your child is in another world.  You then realize she has to have the drugs to help her get through this rigorous transplant process.  We are thankful that her temperature has been normal for the past 24 hours.  We look forward to Day 11 (Monday), which the doctor says is the day they look for  engraftment to occur.  This is when the donor's stem cells begin to take over and will help fight some of the terrible things Kelly is experiencing.  She is still a real trooper and our hero.  I believe in my heart that she will be an exemplary survivor of this terrible disease because she is so strong and determined to beat this.

On a lighter note, when Dave arrived at the hospital this afternoon, he found Kelly asleep with her hand in the macaroni that she was apparently trying to eat.  We wished that a picture could have been taken to post on the website.  Maybe next time.   

March 10, 2005 (Day 7) – At about 3:00 a.m., Kelly wakes up and decides to take a shower.  I couldn’t believe it.  And after the shower, she wanted to walk to the nourishment room.  Her temperature went down to 98.4.  Yeah!!!  By 7:30 this morning, it was back up to 100.3 so back comes the Tylenol.  Audrey came to sit with her again today.  Her temperature did come down and stay down today.  Poor Kelly has a rash of red spots all over her body that itches.  The doctors do what they can to relieve it and say it will go away.  

March 9, 2005 (Day 6) – The evening of March 5, around 6:00, I came in and felt Kelly’s forehead and she was burning up.  The tech came in and took her temperature and it was 104.3.  The nurse came in and said we have to get her temperature down.  She turned down the room temperature and we started filling ice packs to put all around her body.  They started giving her Tylenol also.  They usually don’t like to give Tylenol because they want to see the trend of the temperature but this was so high they decided to provide her with Tylenol every 4 hours.  Her temperature finally went down.  Because of this development, I spent the night. 

The early morning hours of day 6 were very stressful.  At about 3:00 a.m., I woke up and touched Kelly’s forehead and she was burning up again.  I rang for the nurse.  Her temp was 105.7.  We did the routine again.  I was upset to see that her Tylenol was sitting on her table so the nurse didn’t wake her up to take it.  Also, the thermostat had been turned up.  I was very scared.  Luckily, it began going down but by the time I had to leave, it was on its way back up.  Audrey, Kelly’s grandmother (Dave’s Mom), came up to sit with Kelly while Dave went home to sleep.  I did the night shift. 

Dr. Yanik is Kelly’s doctor this week (the bone marrow doctors rotate every 2 weeks).  He is absolutely wonderful.  He tells us that fevers are common at this stage, however, Kelly’s temperature have been a lot higher then what they are used to seeing.  He said her organs are functioning very well.  At this stage they usually see enzymes in the liver but she doesn’t, which is good.  He said there are 17 patients on the floor and in their meeting with the team, Kelly was the patient discussed most of the time.  She has them baffled with the high temperatures, the headache that she’s had almost constantly and the organs being in such good shape at this stage.  They’ve done a bunch of cultures and the CMV virus test and everything came back negative.  He also did a CAT scan that came back negative also.  He once again refers to this time period as the dog days of bone marrow transplant.  It will probably get worse before it gets better.  It should get better once her counts start going up, which should be the 11th day.  However, they are wondering if in her case the stem cells will engraft early. 

When I arrived to Kelly’s room, I couldn’t believe the change from yesterday.  Her head and face are all red.  She has also developed a rash all over her body that itches.  This could have been caused by a number of things – the fever, antibiotics, stem cell transplant.  Kelly received her first neupagin shot today.  She started feeling pretty good around 8:00 p.m.  It must have been a steroid that she received they said would make her feel good.  She wanted to walk to the family lounge with me while I heated the pizza rolls that Jenny bought for her.  Even though she hasn’t eaten for a number of days, she still wanted to try them.  She ended up not eating them.  She has no taste buds right now from all the radiation.  The nurses didn’t want her walking around because her blood pressure was very low.  The lowest I saw was 76/52.  She was still determined to get out of that bed.  They offered to let her go in a wheelchair and she said okay.  Well, the family lounge was pretty crowded so back she went to the room.  This is a good sign that she wants to start moving around.

March 8, 2005 (Day 5) - Kelly's day has been pretty much the same as yesterday. Unable to really eat anything. The doctor said this is common and  this is going to be a  rough week "the dog days of bone marrow transplant" these symptoms are side effects of the treatment.   We really appreciate all the support from family and friends. I know many people read the journal entries. Daily updates are beginning to be difficult. I'll do the best I can to keep you all updated. 

March 7, 2005 (Day 4) - The doctor visited Kelly in the morning and said that she is doing really well. He said if he had to rate her, he would give her a 9 to 9.5 out of 10. He said there is only one person on the floor that he feels is doing a little better then her. Kelly was so excited she called to let us know. That all changed around 2:00. Kelly woke up out of a dead sleep needing to vomit. She did this twice yesterday. With the exception of breakfast, she was unable to eat all day. She is extremely weak and sleeps most of the time. The nurses try to keep her nausea meds going to prevent her from vomiting but sometimes it sneaks up on Kelly - usually in her sleep. 

March 6, 2005 (Day 3) - This was a pretty good day for Kelly. She had many visitors and was actually feeling decent. Since Jenny, Scott and Nathan were going to be with her in the evening hours, I decided to go to Amy's fundraiser at the Heidelberg with Dave. The fundraiser was a huge success. Around 6:30, Amy had several people come for dinner at the Heidelberg. Then at 9:00 the party moved upstairs at the Heidelberg to hear the bands that came to play to raise money for the Leukemia & Lymphoma Society. It was so nice to see so many Saline people that I haven't seen in a long time. Like... Mike Smith was Amy's cross country coach in high school and Mary Thomas, his wife, were there. Mary is the one that contacted the Saline Reporter about running an article about Kelly and Amy. Amy took several pictures and also ran around with a camcorder asking for "hellos" to Kelly.

March 5, 2005 (Day 2) - It's early in the day so I do not know right now how Kelly is doing.  Dave is with Kelly now at the hospital while I get things done around the house.  Amy's fundraiser is TONIGHT at the Heidelberg.  You can find a map by clicking this link:  http://www.teamintraining.org/personalpages/page.adp?page_id=650810.  

Today is Dave's birthday, as well as my brother Larry's birthday.  I wish both of them to have a nice day.  Dave plans to go to the fundraiser tonight so be sure to give him a Happy Birthday!

March 4, 2005 (Day 1) - It was an uneventful day until about 2:00 p.m.  Kelly's stomach began to cramp and she began vomiting.  It took 3 hours for the nurses to get it under control.  After that they were in every 3 hours to give meds so it stayed under control.  The stomach cramps are something Kelly has not experienced before.  

I wanted to make note of more things that we learned yesterday in talking with Leigh and Dr. Yanik because I find myself explaining to people the transplant process.  The donor had to give himself (or someone gave them to him) neupagin shots two times a day for five days.  Kelly has given herself numerous shots over the past 2+ years.  It causes an increase in stem cell production.  Kelly always knew when her blood counts had recovered because her bones ached all over her body.  Sometimes she ached so bad she was in tears.  So that was a huge amount of the discomfort that the donor most likely felt.  On the day he donated the stem cells, he had blood drawn from one arm that went through a filter that took the stem cells out and then the blood re-entered his body in the other arm. 

 The chemotherapy and radiation that Kelly received killed off the young stem cells in her body.  She still has older cells in her body but they will eventually die off.  The nurses post Kelly’s blood counts every day in her room.  Leigh explained that the numbers we see are those of the older cells.  Kelly will begin taking neupagin shots on Day 6, which will stimulate the donor’s stem cells to begin producing more cells.  This is when the Graft Vs. Host Disease (GVHD) occurs.  The doctors want some GVHD to occur because it confirms that the donor’s stem cells are trying to do their job.  They just don’t want it to be too severe and they try to control GVHD with steroids and other medications.  

March 3, 2005 (Day 0) - Kelly started receiving the stem cells at 2:09 p.m. and it took approximately 30 minutes for the bag to empty.  Many people thought Kelly was having surgery today, however, getting the stem cells was like a blood or platelet transfusion.  Dave, Amy and I were all in Kelly's hospital room with her, as were about 6 other people (it was very crowded).  Dr. Yanik, Leigh (Physician's Assistant), 2 other physician assistants, 2 nurses.  They were training while Kelly's transfusion was taking place.  We took a lot of pictures that Dave hopes to have up on the website soon.

Dave and I arrived at 9:00 a.m., hopeful to meet the doctor.  Kelly slept until about 11:00 and then the doctor and Leigh came in.  Dr. Yanik is very personable.  Leigh is very nice also and takes the time to answer many of our questions, which we truly appreciate.  Dr. Yanik said she will be getting mouth sores within the next few days.  Kelly has been staying pretty nauseous but they really don't want her vomiting because this would irritate her esophagus and mouth even more.  So they keep pumping in the meds for nausea.  Right after the transfusion, Kelly went to sleep.  She received a high dose of Benadryl and Tylenol as pre-meds for the transfusion and then afterwards she received nausea medication.  So to sleep she went until about 7:00.  She wanted dinner from the Olive Garden on this special day but didn't eat very much.  She was able to drink a Boost.  Amy made Kelly's favorite dessert for the occasion, cheesecake.  Also, earlier in the week, Amy made chocolate chip cookies that many people were able to enjoy.  

Kelly had many visitors and phone calls.  Thanks to everyone for all the well wishes and hopes and prayers today.  Most of all, thanks to the donor who has given Kelly another chance at life.  We were told earlier that he was a 21-year-old male but the paperwork they had yesterday said he is a 24-year-old male - same age as Kelly.  If the donor has allergies, Kelly will develop the same allergies.  The sun was brightly shining today, which helped to make it a most wonderful, special day that we will always remember.  

March 2, 2005 (Day -1) - Another second journal entry in one day but I absolutely had to journal how important tomorrow is for all of us.  I want to extend my heartfelt, deepest, sincerest thanks to a young man somewhere in the world that had a one in 5 million chance of being called to donate his bone marrow and he agreed to do so.  We hope and pray that his healthy stem cells will enter Kelly's body and do what normal stem cells do.  Allow her a life without chemotherapy and radiation.  Allow her a life where she wakes up feeling good.  With hope and prayer, all things are possible.  Tomorrow is DAY ZERO.  Tomorrow we celebrate a new beginning for Kelly; a new life free of cancer.  March 3, 2005, will forever be a significant day in our lives because of a young man giving Kelly another chance at life.   

March 2, 2005 (Day -1) - I just talked to Kim Kyro, our coordinator with the bone marrow team.  She said the flight carrying the stem cells arrives tomorrow at 9:00 a.m.  She said it will take a couple of hours for them to get up to Kelly.  So everyone please get those hopes and prayers going tomorrow.  We want this to be Kelly's cure.  She is handling all of the treatments very well so far.  Just one incident of vomiting that I know of thusfar.  Tomorrow, March 3, 2005, is Day "0". 

February 28, 2005 (Day -4) - Kelly had two radiation treatments.  One around 9:30 and the other around 4:30.  The nausea is setting in.  Her stomach was cramping a lot last night, which is something new.  She was also vomiting.  Once the nausea meds kicked in, she was able to eat a little.  She says she is very tired and sleeps a lot.  Jill Welch, the young lady Kelly met in a support group when she was first diagnosed, has been keeping us updated on how she felt when she had her transplant.  Being tired was a big thing for her also.  They have a sheet posted in Kelly's room where they record her blood counts and they have March 3 as Day "0" so it looks like that is the day unless something comes up.  Dr. Erba stopped by to see Kelly and said he is amazed at how Kelly's counts go down when she's not taking Neupagin.  He said he is interested in seeing what happens when she gets the stem cells because she'll have a new immune system and her counts should be better.    

February 27, 2005 (Day -5) - I think this is a first.  Two entries on one day.  Kelly received her second dose of cytoxin at 12:00 today.  Hopefully, SHE WILL NEVER NEED CHEMO AGAIN!!!  They really pump in the nausea medications without her even having to ask for them.  She also has the option of asking and gets it when she feels queasy.  Luckily, today wasn't bad at all.  She slept until about noon, ate, watched a movie and then walked (3 miles).  We walked for an hour and figure that we do about 1 mile every 20 minutes based on walking 17 times around 8A.  Her pump battery started beeping at us when we had about 5 minutes to go so maybe we didn't quite make 3 miles but just to be walking is a joy.  Tomorrow she'll have her first two doses of radiation.  She'll have two 10-15 minute intervals.  Kelly really has a knack for decorating.  Amy stopped by today with posters for her "Day 0" fundraiser at the Heidelberg on Saturday, March 5th, at 9:00.  She was impressed with the way Kelly decorated the room.  If you're looking for something to do on Saturday night, be sure to check out the fundraiser.  They have four bands playing - one of them being Justin's band (Amy's boyfriend).  Dave and I are hopeful that Kelly will be feeling okay enough that we can attend.  Hope to see you there!

February 27, 2005 (Day -5) - Every day has a number now for Kelly according to the bone marrow transplant team.  As I've said before, the day she gets the stem cells is called Day "0".  So yesterday (Day -5) she received her first chemo treatment.  Today (Day -4) she gets another chemo treatment.  Yesterday Kelly was feeling pretty good.  She was even trying to walk around Unit 8A but kept getting interrupted with taking vitals or her IV unit needing to be charged.  She also had another chest x-ray yesterday.  Ruth came by to visit and bought us dinner at Chili's.  Thanks much to Ruth.  It was yummy!  

February 26, 2005 - Kelly was admitted yesterday to the hospital for the bone marrow transplant.  She is in room 8A 104 and her phone number is 936-8104.  We had a very nice pre-transplant celebration on Thursday night.  Thank you to all the family and friends that stopped by to wish us all well, especially Kelly.  On Friday afternoon Kelly first had blood draw.  She said they took so much blood that she asked the nurse if she was going to get dizzy afterwards.  She didn't get dizzy.  She then had an appointment to see Dr. Reynolds.  All of the physical exams that she went to last week came back as normal so that was good news.  We also spoke with Leigh who is a physician's assistant.  Our room wasn't ready so she suggested that we go to lunch or back home and call 8A to check on the room availability.  We didn't check in until around 7:30 last night.  Kelly and I went shopping for posters that she plans to hang in her room.  They want us to make the room as homey as possible since she's going to be there for a while.  Kelly gets her first day of chemo (Cytoxin) today.  Keep checking to see when Day 0 occurs.  We believe it will be next Thursday, March 3rd, but that could change.  

February 22, 2005 - We have received the most wonderful news.  Kelly's donor was cleared.  This means she is definitely going to be admitted on Friday for the transplant.  She will go through two days of chemo and three days of radiation and then receive the stem cells, which will be Day 0.  We want to have as many prayers going on Day 0 as possible so I'll post an entry as to when exactly Day 0 will be.  We've been told it could happen the night of March 2 or day of March 3.  I'm sure we will have a better idea next week.  We plan to have a small pre-transplant celebration on Thursday night.  

February 19, 2005 - Kelly spent all day Thursday and the morning of Friday getting her physical for the transplant.  On Thursday morning our first appointment was at 8:30 with Radiology.  The resident, Dr. Herman, talked to us for a long time about Kelly's history and then said Dr. Tsien would be in shortly.  Shortly turned in to being 11:00.  We had a 10:00 appointment with the bone marrow social worker so they called to let her know that we were not going to make that appointment.  Dr. Tsien finally came in to talk about the total body radiation (TBR) that Kelly would receive prior to receiving the stem cells.  She will go to radiation days 3, 4 and 5, twice/day, in 10-15 minute intervals.  She informed us of the short-term and long-term effects of radiation, which we already knew from Kelly having cranial radiation with the Larson's protocol when she was first diagnosed.  The physics doctors came in and took measurements of Kelly laying on her side.  She will be crossing her arms over her chest to help protect the lungs.  

Kelly's next appointment was with a gynecologist, which was basically informational.  The next stop was blood draw then we checked into the BMT clinic for a 1:00 appointment.  They did an EKG first and then the coordinator, Kim, and Dr. Reynolds came in.  Dr. Reynolds discussed the transplant process, the medications and the statistics once again.  He feels she should go through the transplant fairly well since she is young and has a perfect donor match.  Kim brought all the consent forms to sign.  She also discussed was checking to see if Kelly was interested in participating in any of the 3 clinical trials they had given her information about.  We found out that since Kelly's donor is international, the trial comparing the bone marrow method of transplant versus the peripheral method she could not do.  This was to compare the Graft Versus Host Disease (GVHD) between the two to see if one produced less severe results.  The next clinical trial offered was comparing two anti-fungal medications.  The clinical trial that Kelly is going to participate in is to see if a medication called Enbrel helps with making the GVHD less severe.  I know that Enbrel is currently used for rheumatoid arthritis patients.  They were also asking her to sign consent forms to draw blood for the National Bone Marrow Registry.  They will freeze the samples for future use with research.  There was another one that I can't remember the details right now so I'll provide later.  We took all the materials home to read and bring back on Friday.  

One other reason Kelly had an appointment at the clinic was to get the standard bone marrow biopsy that is required 2 weeks prior to the transplant.  Kelly was planning to get sedation so she did not eat and stopped drinking clear fluids 2 hours prior to her appointment.  Good News!!!  Dr. Reynolds said that since she had a bone marrow biopsy on January 31st, there was no need for them to do another one.  Yeah!!!  

The next appointment was at the Kellogg Eye Center.  We were there quite a long time but I think most of it was waiting.  She was prescribed drops for her eyes as an aide with the GVHD because sometimes your eyes can swell and develop sores around the facial area.  

On Friday her first appointment was with Nuclear Medicine for a MUGA scan.  This was for the heart and the procedure lasted about 45 minutes.  Her next stop was with Pulmonary where her lungs were examined.  She then had to get a chest x-ray.  Kim met us when we stopped down for a chest x-ray to obtain all the consent forms that Kelly read over and signed.  I asked her did they know for sure yet that next Friday, 2/25, for admission was a go.  She said they were expecting "clearance" today for the donor and that she would call us on Monday to let us know for sure that everything is a go.  Kelly started medications yesterday in preparation for the transplant so it does look like this is going to happen soon.  

Yesterday, Kelly said that her friend Jackie told her having four perfect 10-10 matches is kind of like winning the lottery.  This is so true because some patients cannot even find one perfect match.  Kelly has been through so much and still has a hard road to travel.  She has a positive attitude and feels very good about the transplant.  When she receives the donor's stem cells, the bone marrow team designates that as Day 0.  It's like a birthday.  We want to have a lot of prayers going on Day 0.  Based on everything being a go for next Friday, Kim said Kelly would receive the stem cells on March 3rd but she may receive them during the night of March 2nd.  So keep those dates in mind if Kelly does get admitted on Friday.  I will be updating the website so stay tuned.    

February 12, 2005 - Kelly came home yesterday around 5:00.  She's so happy to be out of the hospital.  She was sent home with headache medication and an antibiotic that she will take for a week.  They have made multiple appointments for her on Thursday, 2/17, starting at 8:30 a.m. and ending around 4:00 in the afternoon.  This is the physical exam prior to transplant.  They check her eyes, lungs, heart.  Yesterday, we were told the plan is to admit Kelly for the transplant on Friday, 2/25.  But this could change.  

February 10, 2005 - Kelly continues to have headaches.  This seems to be what is keeping her in the hospital because her counts look fine.  Her chest x-ray came back negative and the influenza test came back negative as well.  Looks like the bone marrow team made an appointment for her to go to the Kellogg Eye Clinic next week.  Kelly has to have multiple tests before the transplant occurs.  Luckily, I am feeling okay and was able to visit her from 3 to 11 p.m. yesterday.  Because of vomiting and the headache, she had taken many medications that made her tired so she slept from 3 to 8.  We watched Shark Tales and actually popped some popcorn.  I know tonight we'll be watching the OC and Point Pleasant.  Hopefully, she'll be home before the weekend.

February 8, 2005 - A lot has happened since last Friday.  On Saturday afternoon the nurses suggested that the doctor that supervised the senior resident be called to do something about getting her pain medications changed.  Kelly kept on telling them that morphine did not work well for her but they kept giving it to her rather than the Dilaudid.  The doctor they called did prescribe Dilaudid and we asked that he be called again to up each dose to 1 mg rather then a 1/2 mg.  The doctor approved this and with the mixture of the other pain medications they are at least able to keep her comfortable.  On Sunday, the team decides they want to do another spinal tap to see if they have meningitis.  We kept telling them that her Dad is home sick with the flu but they still want to do the LP.  I asked who was going to do the LP.  Dr. Azim raised his hand and said, "I am."  I asked if he was the one that failed to do one on her the other day, he said no.  So, around 4:00 Dr. Azim and an intern come in to do the LP.  This is also a training session.  He is going into great detail explaining everything he is doing.  Needless to say this was the longest LP she has ever had.  He was having trouble doing the procedure as well.  Had to numb her with lidocaine again so I asked how many attempts are made before they quit poking her.  He said there is no set number.  I asked how many times he poked her, he said 4 times.  I said why don't we just wait and let Irene do this on Monday.  He said there is a timing issue to this also.  I said they are already pumping in the antibiotics so I did not see why waiting would be bad.  He then told Kelly the decision was hers.  Kelly said she was fine and she wanted to get it over so go ahead.  While all of this was going on, David called to say he was feeling so bad he wants to be taken to the emergency room.  I did not think it was a good idea to leave while they were in the middle of the LP because of cleanliness issues so I waited.  But when he was going to trying again, I asked him if I could leave because I have to bring my husband to the hospital.  He said my leaving was fine.  I felt comfortable with this because Kelly's grandmother, Audrey, had come to visit and she was going to be there.  Apparently, after I left, that next time he tried he was successful.  Dave ended up having an influenza diagnosis, thank goodness (I thought it might have been something worse).  Audrey ended up spending the night and she and Kelly talked into the wee hours of the morning.  Ruth brought them a nice dinner that they thoroughly enjoyed.  Thanks much to Ruth.  

I did not visit yesterday because I have a sore throat.  My throat feels better today but I am still coughing so I am best to stay away today as well.  If any one is healthy and able to visit, I'm sure Kelly would enjoy it.  Many of her friends are sick also.  The emergency room doctor said there are 2 types of flu going around right now and it seems to be hitting everyone we know.  Kelly keeps spiking a temperature so she's stuck in there until it leaves.  We hear it is common to run a temperature while getting methotrexate.  It could be a combination of the flu and the chemo.  We will see how the day progresses.  

February 5, 2005 - I arrived at the hospital last night around 6 p.m.  Dave was there and said Kelly had a bad day.  Kelly was crying.  The doctor had just come in about her pain issue.  Her back was still hurting from the failed lumbar punctures yesterday.  Irene had done the lumbar puncture yesterday morning with the fellow watching her.  Kelly expressed to the doctor that the pain medication they were giving her wasn't working and she wanted more Dilaudid.  The senior resident did not want to give her anymore Dilaudid.  When I arrived, a female resident came in and was saying they were going to give her oral morphine and another drug to see if that would help.  They felt the Dilaudid did nothing to alleviate the pain so they didn't want to give it to her anymore.  They only gave her half a milligram.  I tried to explain to the female resident that Kelly doesn't complain about pain until it's usually gone too far and it takes a lot of hits with pain medication to get the pain to subside.  No matter what I said, they had made their decision and was sticking to it.  Luckily, the nurse was very helpful in trying to use a combination of drugs that were ordered to see if that would help.  We also discovered that if this issue comes up again that we should ask that Kelly be seen by the pain management team.  Around 8:00 Kelly developed a fever - 100.9.  The highest it got last night was 101.4.  She was also vomiting last night.  So they pumped in the anti-nausea meds and she began to feel better as far as being nauseous.  She also developed a headache.  The nurse on the next shift was trying to help Kelly get her pain under control with the meds that were ordered so at least the nurses care about pain management and keeping cancer patients comfortable.  We woke up around 8:00 this morning and Kelly is feeling a lot better.  Oh yes, Kelly's feet were killing her also from all the walking we did.  The first night we walked, she was walking in soft, cushy slippers.  The next night in her tennis shoes.  I guess walking in the slippers is what did the damage.  

Dave called about 9:00 and he is feeling very sick.  Pain all over his body.  I came home since Kelly was doing better to see if I could assess if he should go to the hospital or not.  The complaining of chest pains kind of bothers me but he also has a temperature of 99.8 and since he's achy all over I feel it's probably the flu.  Tylenol has helped a little but we will see how the day progresses.  

February 4, 2005 - Yesterday, Kelly was due for a lumbar puncture (spinal tap) that injected methotrexate into her spine.  The fellow on the floor attempted to do this but was unable to.  He puncture her 3-4 times and stopped only when Kelly was in tears from the pain.  Kelly called me at work upset so I emailed Dr. Erba and Irene.  They know that Kelly's tolerance for pain is very high and when she's in tears something is wrong.  The fellow said he was going to put in an order to have the spinal done in xray.  Dr. Erba & Irene to the rescue!!!  Both Dr. Erba and Irene emailed me back apologizing that Kelly had to go through that experience and that Irene would do her LP today.  Thank goodness.  Irene was not in yesterday, otherwise, she would have done it.  For the rest of the day, Kelly pretty much stayed on her back.  The nurses also gave her a heating pack to try to relieve the pain.  Of course, pain medication helped also.  Kelly also started to become nauseous yesterday afternoon.  So, more meds and asleep she goes.  Kelly took a look at the bandaid that covered the point where the fellow tried to do the spinal tap and it did not even look like it was in alignment with her spine.  We are confident the LP today will go much smoother thanks to Irene.

Pat Steele called Kelly yesterday about the transplant.  We thought she was retiring effective Feb. 1st but we are glad to still hear her calling us.  She said Kelly had four 10-10 matches.  Wonderful!!!  They are concentrating on one 21-year-old male that needs to go in for further testing.  They are still tentatively scheduling her to be admitted on 2/21 but this could change.  Kelly will have to begin getting checked out physically as well.  So I'm sure there will be many appointments made for tests.  They thoroughly check out Kelly as well.  Heart, organs, everything pretty much.  Kelly wants to have a celebration the day she gets the transplant.  I'll have to talk to Pat to see how to plan this.  We really want to do this because this will be a celebration of a new life for Kelly that will be free of leukemia.  

The Saline Reporter ran a wonderful article about Amy's commitment to run the Leukemia & Lymphoma Societies Team in Training marathon in May in Vancouver.  The link is: http://salinereporter.com/stories/020305/lif_running%20for%20her%20life001.shtml.  I want to thank everyone for being so generous with donations to this cause.  This disease has affected our family  in so many ways.  It's a terrible thing to go through, especially when it's your daughter.  We are hopeful that one day they will find a cure not only for leukemia but for all cancers.  Thank you once again for helping Amy reach her goal.  

February 2, 2005 - Dr. Erba has decided since Kelly's counts are so low he is not going to give her the full dose of Ara-C this time.  She will not get the intravenous portion but will get the spinal portion, which caused her much pain during Cycle 2.  I hope she doesn't experience the pain again.  He doesn't want to get her physically so down with her counts before the transplant which the bone marrow group continues to say will be a 2/21 admit for Kelly.   But this is not written in stone we are told.  She will be getting Lucovorin this time, which is new this cycle.  The BIG bottle of Methotrexate was started last night around 6:00 and will go over the next 24 hours intravenously.  I believe today she get methotrexate to the spinal with a lumbar puncture.  Physically, Kelly is feeling pretty good.  We actually walked around 8A last night for 2.5 miles.  We have to stay in the unit when we are in 8A.  Besides she had the chemo hung on her IV stand so I'm sure they don't want us wandering.  

January 31, 2005 - What a day at the hospital.  We arrived at 10:30 for the usual blood draw.  We then went to the waiting room for an appointment at 11:00 for Kelly to get a bone marrow biopsy.  About 12:15 Kelly's name was called.  We were told that her biopsy was cancelled.  We wish they would have called us.  Kelly was starving because she had planned to be sedated since she has the Hickman port and she wasn't suppose to eat prior to the procedure.  So we went to Chili's and stuffed ourselves with some good food.  We were about to call Danette to ask where a Coldstone ice cream store was in Ann Arbor.  As we walked to the car, I noticed right across the street was a Coldstone.  So off we went stuffing ourselves again.  We shared a Cheesecake Fantasy that was yummy!  Off we go to the hospital again, this time for a 1:45 appointment with Irene and then Dr. Erba.  Irene came by first to explain the confusion.  They cancelled the bone marrow biopsy because they had heard from the transplant team that Kelly's transplant was going to be scheduled for February 21st.  Kelly has to have a bone marrow biopsy 2 weeks prior to the transplant so they thought they would spare her the pain this time.  However, her blood counts took a real nose dive.  Her white count was 20 on Friday and today they were 1.6 and her neutriphil was 0.6.  This caused concern to Dr. Erba so the bone marrow biopsy was back on for today.  He wants to make sure the leukemia is still in remission before he starts the next cycle.  If the leukemia was back, Dr. Erba would be giving Kelly different chemotherapy then was planned.  We told Dr. Erba that we have not heard the 2/21 date for the transplant; this was a surprise to us.  He said that sometimes dates can change.  So he decided to admit Kelly and give the next cycle (if biopsy results came back okay).  He expects that her counts will have recovered about the time they planned to do the transplant (if it is really scheduled for Feb. 21st).  We finally made it to her room around 5:00.  She is in 8A, Room 8417.  Her phone number is 734-936-8417.  I left at 9:00 and the resident still had not stopped by to see her.  The only thing planned for the night is hydration.  Hopefully, they'll get her going soon.  

January 26, 2005 - Kelly had her blood draw today and her counts are still good.  Pat Steele called Kelly with an update.  She said they had another 10-10 match that they want to test further so Dr. Erba wants to admit her on Monday to do another cycle of chemotherapy.  Pat said she felt it was worth the wait if we can get the best possible match and donor.  Kelly asked when she thought the transplant would take place.  Pat said mid- to late-February or possibly even March.  Kelly picked up some information from Pat describing 3 clinical trials that she is eligible to participate in.  So she can read the literature and make the decision to participate or not.  Clinical trials help medical professionals find better treatment protocols and sometimes, hopefully, a cure.  The decision is up to Kelly though.  I don't know anything about the trials yet but I'm sure we'll have lots of reading time in the hospital next week.

January 21, 2005 - Today was first a blood draw day and then infusion for Vincristine.  Kelly's counts have basically bottomed out - neutriphil is only .2.  Dr. Erba stopped by while we were waiting to go into infusion for the Vincristine.  He said that she did a lot better with this cycle then she did when she received the same meds in cycle 1 because first there were leukemia cells present and then the mouth sores caused the counts to go down.  She's back on steroids for 4 days and then she'll see Dr. Erba on 1/31.  We asked if she was going to be admitted and he said no.  He hasn't talked with the bone marrow team but thinks that the next cycle will not be given so we may be getting close to the transplant.  Dr. Erba said he will email the transplant team and ask them to give us an update as well.   Grayce must not have worked today.  We waited for 4 hours in the waiting room for something that took no longer than 30 minutes.  

Amy met with a reporter that works for the Saline Reporter.  They plan to run a story in the paper about Amy's fundraising efforts for the Team in Training Marathon.  They were trying to make it so Kelly could meet also but it just didn't work out with the infusion appointment.  Amy was saying that the reporter doing the story has CML, which is a chronic form of leukemia that is treated long-term, I believe.  I don't know much about it really but I can sure tell you many things about ALL.  

Please be aware that sometimes I update the journal and forget to change the date in the header.  My last update was on 1/18 but I forgot to change the date in the header.  I try to keep this updated whenever an event occurs.  

January 18, 2005 - Kelly went for her blood draw yesterday and her counts were all good so she did not need a transfusion.  That's the quickest Dave said he's ever gotten out of there.  She'll go back tomorrow for another blood draw with an appointment in the infusion room but hopefully she won't need it.  She appears to be feeling pretty good.  Sometimes she puts on a good front though.  She definitely has an appointment on Friday with infusion because she gets the final chemo for Cycle 3 - Vincristine.  No news yet from the bone marrow group.  Like I said before I have a feeling it may happen all of a sudden.  

January 15, 2005 - Kelly was able to come home last night.  All is quiet thusfar.  Just feeling a little nauseated every now and then, which she take anti-nausea medicine when it occurs.  

January 14, 2005 - Kelly finished off this hospital chemos last night around midnight with an injection of Vincristine.  She'll have to go back to the hospital next Friday for the final chemo injection of Vincristine.  Things have been going pretty smoothly with the exception of Kelly beginning to ache all over her body on Wednesday night.  She developed a low grade temperature with the highest being 100.2.  The doctor on the floor felt it was probably a flu that nothing could be done about except give her pain medications to get her through it.  Dr. Erba thought it could be caused by the steroids she's been taking with this cycle.  We are hopeful that she'll up to coming home today.  

January 10, 2005 - We (Kelly, Me, Dave, & Amy) had the bone marrow orientation at 10:00 today.  A man that has lymphoma and his wife attended also.  He will be getting a related transplant, whereas Kelly will be getting a non-related transplant.  Kelly's will also be the full intensity transplant in that she will need to have both chemo and radiation to rid her body of her immune system.  The meeting basically covered everything they provided in a notebook that they gave to us in November but it was a time when we could ask questions also.  It appears it will be a number of weeks before Kelly gets her transplant so Dr. Erba is going ahead with Cycle 3.  She was admitted to 8B, Froom 423 so her phone number is 936-8423.  She was pretty tired today from not sleeping well last night so once we got into the room (around 4:30, and answered a few questions for nurses and doctors she zonked right out.  Dr. Erba thinks the mouth sores may have developed during the 1st cycle because the leukemia cells were back so he's hopeful the sores won't happen this round.  

January 8, 2005 - Kelly had her Hickman port placed in her chest yesterday morning.  We were home by 12:30 so it really didn't take that long, which is good.  I thought we would be there all day.  As we were walking out, we saw Ricky and his parents sitting in Dr. Erba's waiting room.  He was to have a bone marrow biopsy yesterday.  We hope his results are good.  We received wonderful news yesterday!.  One of the coordinators called to say that the 2 people they requested to get further blood testing were good matches for Kelly.  One was 8 out of 10 and the other was 10 OUT OF 10!!!  This is awesome news.  This is still preliminary because they still have to get physicals.  She said they were also going to be asking more people to get further blood testing because they want the best match they can possible get.  She was going to also call Dr. Erba to see if he would cancel Kelly's cycle 3 beginning on Monday.  It is out feeling that Dr. Erba will want to go ahead with the chemo cycle.  So we have a bone marrow orientation meeting on Monday morning and then Kelly sees Dr. Erba in the afternoon to be admitted for cycle 3.  We'll see what Monday brings.

January 5, 2005 - Kelly has been very achy the past couple of days so we expected that the Neupogin was kicking in.  This was confirmed today at her blood draw.  Her counts were up and her platelets were 75 so she didn't need a transfusion today.  Yeah.  We had to wait around for Kelly's treasured blue CPI card from infusion but it was a beneficial wait.  We met Grayce who is friends with Kelly's aunt and uncle Ruth and Zeljko.  Grayce said she saw the name and grabbed the file so she could come out and meet us.  She plans to keep a lookout for us during future infusion appointments.  This is excellent!  Kelly has an appointment to get a Hickman port on Friday.  This is a surgical procedure.  Rather then have the PICC line in her arm where she gets blood draws and chemotherapy, the port will allow access through her chest.  A PICC line is only suppose to be used 6-8 weeks so the time has come to get the Hickman.  On Monday she sees Dr. Erba at 2:30 and will be admitted for Cycle 3, which are the same medications as in cycle 1.  I hope she doesn't get the mouth sores this time.   

January 3, 2005 - I just found out from Kelly talking to her friend online, Rob (the guy that created the picture at the top of the website), that I forgot to change the the last journal update at the top of the page.  This will be the 4th entry since Dec. 25th.  Sorry about that everyone.  Kelly went to get blood work done today and waited around just in case she needed a transfusion.  She did need a platelet transfusion since her count was down to 11.  Other than that she had them check out one of the lines in her PICC.  She has been unable to flush one of the two lines.  They decided not to do anything since she will soon be getting a Hickman port in her chest.  Kelly also had petechia (small blood spots) forming on her hands last night.  This was because of her low platelet count.  She goes back for a blood draw on Wednesday.

To Rob: Thanks for the work on Kelly's picture.  I am sure you already know that we think it's awesome since we have it in the header of our website (of course, we think you had a perfect model).  You can manipulate our pictures any time you want.  Thanks again. 

To Kathy, Jessie & Julie:  We are so sorry to hear of Vern's passing on Dec. 21st.  He is now out of pain and in a better place.  I wish I could have been there to hug you.  Love, Kathy 

To Ronnie:  Thanks for your words of encouragement almost on a daily basis.  Your having gone through a transplant operation yourself know best some of the challenges that Kelly faces.  

January 2, 2005 - Kelly has been doing well all weekend.  She had a few friends over on New Years Eve - Tonya, Lauren, Kevin and Pete.  She goes in for blood work tomorrow to see if she needs any blood or platelet transfusions.