Kelly's Get Well Site
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Journal last updated December 19, 2006 |
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Kelly's Get Well Site
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December 31, 2002 - Dr. Erba just called Kelly to say that his preliminary
look at her bone marrow looks really good! Thank You, Lord!!! He
said her bone marrow looks the better then it has been since she was
diagnosed. They still have to look at the core bone marrow sample that
they took but he said he would be shocked if it came back with a problem since
her bone marrow is looking so good to him. He expects her blood counts
will continue going up and he will try to put her on half doses of oral
chemo. She has to go in again on Friday for another blood draw. We
are so happy and thankful that he was able to call today. I wanted to do this last week but since I couldn't we hope everyone had a very nice Christmas and that you have a safe and Happy New Year!!! (KH) December 17, 2002 - Kelly's last spinal tap DID NOT happen yesterday. Her white blood cell count was low and her Neutriphil count was only .5 so Dr. Erba has decided to give her more of a break to see if her counts come up next week. He's taken her off of every medication to see if this could have an effect on her counts. He said there was no certain "magic" to having the 5 spinal taps 5 weeks in a row and they would put the last one in at the end of this round. Kelly should be feeling really good during the holidays, so this is good!!! He said her monocyte count is going up which is usually a sign that her Neutriphil count will go up soon. Please pray that her counts turn around soon so she can continue with the treatment schedule. For the most part she's been feeling pretty good, so that's a good thing. She goes back next Monday to see Dr. Erba to see if her counts have improved. I'll try to keep you posted over the holidays but want to let you know that on Christmas Eve we will be at the Morrison household and Christmas Day will be spent at Grandma & Grandpa Hatfield's. The holidays will be extra special this year for all of us. If I don't get back to the journal until after Christmas, I would like to wish everyone a very Merry Christmas and Happy New Year. Thanks to everyone for your support, thoughts and prayers for our family during these past 6 months. (KH) December 10, 2002 - Sorry for the delay in getting a journal entry up but it was busy last week. It was my birthday on Thursday and I had about the best birthday ever this year. To start, Kelly and Danette brought 2 big trays of bagels, Danish and fruit to my office. What a surprise to hear clip-clop down the hall and look up to see Kelly standing in the door. That was the first time she'd been to my office. It was nice because she and Danette were able to meet some of my co-workers who have been so supportive through all this. I then went out with Mom, Ruth, Danette and Larry on Friday for dinner and shopping. When I arrived home at 11 p.m., a "real, decorated" Christmas tree was standing in my living room. Amy and Justin sat it up for me as a surprise. Double surprises! My birthday was awesome! To top it all off, we went to see the movie that Amy took part in over the summer. She was lead actress in "April's Mirroring." Me, Dave, Kelly, John, Meemaw, Grandma, Larry, Justin, Julie and a friend of hers, and the Cichon's (the underwater scenes were filmed in their swimming pool) were there at the Michigan Theatre in Ann Arbor to see the premiere. It was awesome! We hope to get our copy by the end of this month. We then all went out to dinner together so it topped off a wonderful week. Now to update you on our dear Kelly. She went in on Friday for blood draw to see if she needed red blood cells. I'm happy to say she did not. She had the spinal tap on Monday - 4 down and 1 to go. After what happened last Monday (ending up in the emergency room - vomiting and headache), they were quick to give her hydration and anti-nausea medicine to ward off a headache. And I'm happy to report that she's been doing good this week (keep your fingers crossed). Her hair was beginning to grow back but she's lost all of it again except for a perfect circle in the back of her head, which is rather weird since it's positioned where she lays on it most of the day. She's still off the oral chemo this week because her neutriphil counts are only at .8. They need to be at 1 to continue the oral chemo, which they say is not a big deal to miss at this stage of the treatment. In the blood draw area I was able to meet a young lady that Kelly met at the support group she went to last Tuesday. Her name is Jill. She has A.L.L. also. She said she was so happy to meet someone else having the same thing that she did. Most in the group have Hodgkins or some type of lymphoma. She was diagnosed when she was 26. She will end her 2-year treatment regimen in February 2003 and I must tell you - SHE LOOKS GREAT!!! She said her hair grew back a different color and curly. She feels good but still has to deal with fatigue almost every day. It is so encouraging to meet someone like her. Irene saw us talking to her and while doing the spinal tap mentioned two of her other patients that had A.L.L. A 23-year-old woman that was diagnosed at 18. She stopped in right before Thanksgiving to introduce Irene to her newborn baby. Another patient is a fellow that is 30 now. He finished treatment 4 years ago and is travelling in Europe. She said when he was stuck up on 8A (bone marrow transplant section of the hospital) he made a promise to himself to do some travelling when he got better. Irene told Kelly she has to email her in four years to let her know what she's up to. WE LOVE HEARING THESE SURVIVAL STORIES!!! (KH) December 3, 2002 - I must say that we had a very nice Thanksgiving weekend. Kelly and John were able to join us at my parent's house on Thanksgiving Day for dinner. She actually ate and kept it down! She was feeling quite tired that day and on Friday so she slept most of those two days. But she was resting up for the weekend. It was nice because she was able to go out and see friends that she hasn't been able to see for a while. It didn't take long, however, for reality to come back on Monday. She got up to get ready to go to the doctor for radiation and the next spinal tap. Asked me to fix her something to eat but shortly after that I could hear her vomiting in the upstairs bathroom. Needless to say, she didn't eat but took nausea medication instead. She had her blood drawn first, then we went to radiation and then back to see Irene and Dr. Erba. Her counts have down some so they are having her stop the oral chemo this week and the antibiotic. She was complaining of a headache about this time, too. He said she's a little anemic so she needs to go in on Friday to get blood drawn again and see if her counts go down more because she may have to get a tranfusion of red blood cells. Her platelets are normal right now. They proceeded with the spinal tap, putting methotrexate into the spine. Three down, two to go. They started an iv and gave her Ativan for her headache. She was able to eat a little while we were waiting to see the doctors but that all came up on our snowy drive home. She was vomiting from 5:00 to 9:30 and her headache was getting worse because of all the pressure from vomiting so we decided to call the on-call doctor who told her to go in to emergency to get evaluated. They gave her hydration, Kitril, Ativan, and Dilaudid for her headache. It took several doses to finally get her headache and vomiting under control. We got home around 3:45 a.m. Needless to say, I didn't go to work today. She went to her LAST (yeah) radiation appointment this afternoon. She wanted the mask that she wore while getting radiation so badly and they did give it to her. We were finished there at around 6:00 so she decided to stay for a support group meeting for young adults (18-30) that have cancer. The group only meets once a month and she wasn't able to go last month because she wasn't feeling well. I hope she will get some benefit from the group. I'm sure it's helpful to be around people being the same age that are also dealing with cancer. (KH) November 28, 2002 - Kelly, thankfully, has been able to control her nauseous feeling. The nurse last Friday at the hospital told her of a combination of anti-nausea drugs that work good taken together. That combination is what's made her keep control. On Monday she had the second of five spinal taps in this round. The doctor is concerned about her counts getting any lower so he prescribed a folic acid vitamin for her to take every 6 hours around the clock. He thinks her body is absorbing the by-product of the methotrexate, which is causing her counts to go down and causing her to be so nauseous. He's hoping this will help keep everything under control. She's been feeling pretty good this week. Thank goodness!!! I hope she will be able to eat a hearty Thanksgiving dinner today. On Tuesday she asked the radiation doctor why they keep on having to take x-rays. She said it was basically her "analness." They put shields over the eyes but try to get as close to the eyes as possible without damage. Also, even though the mask fits tightly, she may be positioned slightly different so this is why they do this so often. That made us feel better about it. I would like to wish everyone a Happy Thanksgiving!!! Don't eat too much! (KH) November 22, 2002 - A full week of radiation and oral chemo and spinal medication finally caught up to Kelly yesterday. Beginning on Wednesday, if you asked Kelly how she was feeling, she would say, "Like I gotta puke." Late last night it set in and she couldn't stop vomiting. So, I called the doctor's office today to see if there was some other way for her to take anti-nausea medication other than orally because, if you're vomiting, you can't keep the pills down, not to mention keeping the chemo and antibiotic pills down that she's suppose to be taking. They ended up having her come in for a 2-hour hydration and shots for nausea. She was also getting a headache while there and they gave her a shot for that too. After this, on we go to radiation. We now truly appreciate Dr. Erba and Irene's organization skills. Radiation changed Kelly's appointment twice this week. But I guess they have to shift schedules due to patient's appointments to get chemo, etc., so we can appreciate that, but they've also had to re-calibrate and take x-rays over again twice. Kelly feels very uncomfortable with this but I feel maybe it's something they run a check on every time before giving a patient radiation and is something they have to adjust periodically. We are going to mention this to Dr. Erba and Irene when we see them on Monday. At least she was feeling like eating when she came home. Still feeling a little nauseous though. She really does think it's the radiation because it's a different kind of nauseated feeling then with the straight chemo. She's a tough one. November 18, 2002 - I'm happy to say that Kelly's feeling good continued through the weekend. She had her first radiation treatment today. It was basically uneventful except she came out with small indentations all over her face. This is how tight the mask fits over her face while they are doing the radiation. The technician said she will take me in to see everything tomorrow because they were running behind today. After this we went to get her blood drawn (her blood counts were really good today) and then waited to see Irene and Dr. Erba. It was all good news - bone marrow showed no signs of leukemia and he even described that they have three different methods of looking for leukemia cells but they didn't see any (Thank you Lord!). She still in complete remission. She starts taking an oral chemo medication today for the next 12 weeks and she also got the spinal tap today in which they inject methotrexate into the spine. Once again, she didn't flinch while being given the spinal. On a pain threshold she says they are nothing compared to a bone marrow biopsy. They also look at the spinal fluid for leukemia cells and measure the protein and glucose values as well. Dr. Erba also put her on an antibiotic because her immune system can be affected during this round to cause some type of pneumonia to develop so they put patients on them to prevent such an occurrence. Dr. Erba mentioned that there a recent study has shown high doses of chemo at this stage in the regimen are effective. He said since he hasn't had anyone relapse doing the radiation and chemo, he's still going with what he had planned rather then the high-dose chemo regimen. I bought Kelly a bunch of magazines to entertain her while she lays flat after having the spinal tap. Irene must have said 4 times today, "No headaches!" Kelly had a little bit of a headache when we came home but I'm hoping it's because she was hungry. They recommend drinking Mountain Dew after spinal taps so I bought a bunch of that too. So, on we go to the next round... Let's hope the side effects (nausea and fatigue) don't hit her too hard. (KH) November 15, 2002 - What a wonderful week this has been! Kelly has felt better this week. We've had two BIG things happen this week. Kelly's Hickman was removed from her chest (she is so happy!) and the bone marrow results came back good (no leukemia cells). Thank you Lord! She went to a pre-planning radiation appointment before getting her Hickman out on Thursday morning. She said she feels like Hannibal Lecter. They put a form-fitting mask over her face and screw her in to the platform she lays on so it's impossible to move her head while getting the cranial radiation. This starts on Monday morning at 11:30 and afterwards she gets the first of 5 spinal taps where they inject medication into the spine. Apparently, the leukemia cells like to hide in the brain stem and spine so this phase of treatment concentrates on the brain and the spine. I'm so glad she's had a week to feel good. I hope she is able to stay strong throughout the next 3-month regimen. We (Amy, Kelly, John, Dave & I) had a very nice dinner and a few laughs at Mac's in Saline on Wednesday night to celebrate Amy's birthday. ANNOUNCEMENT: Amy's movie, "April's Mirroring," (I think that's the name of it) will be premiering at the Michigan Theatre on Sunday, Dec. 8. Don't know the time yet, but all are welcome to see Amy on the silver screen. (KH) November 12, 2002 - Kelly had a better day on Sunday and went in for a bone marrow biopsy on Monday morning. It's agony to sit in the room and hear her moaning while Irene is doing the procedure. Kelly explains the painful parts as being when she gives the shot to numb her and when Irene extracts fluid from the bone marrow. Apparently, it's being taken from a pressurized area of the spine so the pull really hurts (Irene had to do it a total of 3 times but Kelly describes the first time as being the worst). Kelly wanted me to video tape it but I didn't think it was such a good idea. Irene agrees and suggest doing the very last bone marrow biopsy, which is in about 15 months. What a long haul Kelly has in front of her but she's strong and I know she can do it. On our way to the appointment she was in such a great mood - laughing and joking. She truly amazes me. They had to do more blood cultures because the ER found bacteria in the tests they drew on Sat. Irene doesn't think it's really an infection because her temp went down but they want to make sure. On Thursday we go to radiation for the pre-planning (they make a mask to put over her face while she's getting cranial radiation) and then she gets her Hickman port out - she is so happy! She'll be able to take a shower like a normal person again. Monday starts the next round. Every Monday for the next five weeks she gets a spinal tape and chemo put into the spine. She also has 10 days of cranial radiation (the next 2 weeks - Mon through Fri). The remainder of the 12-week regimen she takes an oral chemo medication. Tomorrow night we are all going to Mac's to celebrate Amy's birthday. She turns 20 on Thursday. Happy Birthday, Amy! We love you! (KH) November 10, 2002 - One thing I've learned with Kelly's leukemia battle is you never know what the day will bring. On Friday, she woke up early with achy pains all over but severe pain in her lower back. This is most likely the bone marrow over producing because of the Neupagen and is expected. When it happens, it's highly likely she can stop the Neupagen shots because her blood counts have turned around but Dr. Erba wanted her to stay on them until Saturday. I stayed home to make sure she took her anti-nausea meds so she could eat and take her pain meds. Gave her a massage and went to work. Came home around lunch to feed her again so we could keep the pain pills going. Thank goodness she was able to eat on Friday and keep the pain pills down because it helped but she was still very uncomfortable most of the day. Saturday she woke up with a temperature of 101.3, was achy all over and coughing. I called the on-call hematologist/oncologist to get their opinion even though we felt it was probably the Neupagen doing this. He wanted to review her records and call me back. In the meantime, Kelly took 2 Tylenol. He called back to say he had paged Dr. Erba because her treatment is so complex and was waiting for his recommendation. Dr. Erba wanted to her go to the emergency room. At this point, Kelly's temp had dropped to 100.4 so she didn't want to go but I tried to explain to her that is was the Tylenol and it was better to go because it could be just hiding something that's wrong. I called the on-call doctor again to let him know and he said she still needed to go in so the doctors could rule out infection, etc. Off we go to the emergency room, and as we expected, her first temp was 99.6. The doctor took blood and did a chest x-ray. I'm happy to say we came home around 4:00 yesterday because EVERYTHING WAS OKAY! ALL of her blood counts are normal right now. A scary point was when Dr. Erba had them do a manual count of her differential because her white blood cell count jumped from 2 to 11 he wanted to make sure it was neutriphil cells rather than lymphocyte cells. They came back saying what we wanted to hear. They were neutriphil cells. Thank the Lord! Getting test results are scary right now but when they come back as being okay it rejuvenates you with positive feelings that Kelly will indeed beat this thing. Keep on praying. Thank you to everyone for your cards of support. As I massaged her on Friday morning, she was sharing some of her cards with me so they really do mean a lot to her. (KH) November 7, 2002 - Things seemed to be progressing along fine this week. Kelly had her last dose of chemo on Thursday for this phase of the treatment. They had her taking the Neupagen shots after her discharge from the hospital until Saturday but her counts were going down so they started the shots again. Today she went to blood draw and then she had an appointment with the radiologist to talk about the next phase of treatment at 8:30. We expected to only be there a couple hours but we just got home (7:00 p.m. - almost a 12 hour day considering we left home at 7:30). She wasn't feeling too good when we got to the hospital. They took her temp in radiology and it was 100.9. This made her anxious because she's been told whenever her temp reaches 100.5 she has to be hospitalized and she DID NOT WANT TO GO BACK INTO THE HOSPITAL!!! We talked to the radiologist and she signed the necessary paperwork and then we were told to go back to the cancer center for blood culture draws. So back we go to the blood drawing station and then up to the reception area to find that Dr. Erba is coming in to see her at clinic (he's usually not in clinic on Thurs). He said it is unusual to see the counts going down like this but he thinks it happened because the L-Aspariginase (her last shot on Thurs) brought them down again and he took her off the Neupagen too soon. This is why she started back on the Neupagen through Saturday. He saw her as being anemic, did not see any obvious signs of infection (he'll wait to see the blood culture results before prescribing an antiobiotic) and felt if he transfused her with red blood cells today she would feel better. Thank Goodness - IT WORKED!!! Her temp started coming down and she actually felt like eating after the first bag of red blood cells went in. The next thing is a bone marrow biospy on Monday at 8:30. This, and making sure her blood counts are good, will determine when the next phase of treatment starts. They are hoping for Nov. 18 again at radiology for the planning stage of treatment. They do a CT Scan of her head and then make a mask that she will wear while getting radiology treatments and the good news here is Dr. Dawson (the radiologist) said they have progressed and determined that she will only need 10 treatments rather than 12. So Dr. Erba confirmed that we are kind of in limbo right now because everything is based on what happens next week with the bone marrow and blood counts. Everyone keep Kelly in your thoughts and prayers that her treatment can proceed as planned. We don't want any setbacks. And I'm so happy that she is feeling better right now. Let's hope and pray she stays that way for the next week because the radiology brings along with it nausea and fatigue so she deserves a week of feeling good. I'm sure you all agree. (KH) October 31, 2002 - Good news! Kelly came home from the hospital on Tuesday evening. Her Aunt Danette visited in the afternoon and stayed long enough for her to be released and bring her home. The doctors were still concerned about her blood counts being low so she had to go in to get blood drawn yesterday but she didn't need a transfusion. She had to go in today for the last chemo treatment (a shot) in this round. Many of the infusion nurses (all dressed up in costumes) were asking where she had been. Her counts are starting to recover. Her neutrophil count is even in the normal range. That is great news! The visiting nurse will come tomorrow to take blood again so they are really watching her blood counts. Kelly is so happy to be home. This was a hard week for us to get through but we are all feeling better now. Guess we have to face the fact that we will have to deal with some tough issues every now and then while she's going through this intensive treatment. The doctors want her blood counts to come up more before she has a bone marrow biospy. She goes to see the radiologist a week from today to get set up for 12 days straight of cranial radiation. She still has a tough road ahead so keep those thoughts and prayers going. Hope everyone had a Happy Halloween! October 28, 2002 - Kelly is still in the hospital but wants to home badly. Dr. Erba wants to see her blood counts come back up before letting her go. She had her 5th Neupagen shot yesterday so we are only in the middle to those shots. Hopefully, we will see her counts go up in the next day or two. We are going to ask, however, if she can come home after receiving her 2 chemo treatments today. She's been at home with her counts that low before. Glad to say she FINALLY DOES NOT HAVE A HEADACHE!!! She's feeling nauseated quite a bit, therefore, doesn't eat a lot during the day. But has started asking for peanut butter and jelly and tuna sandwiches from home. This is a good sign. They have also set her up with physical therapy exercises because they are concerned her heart will get weak from laying in the bed so much. This has been a rough treatment this time. It's getting harder and harder to see her go through all this. Irene told us she will start feeling better during the next 12-week round - but involves 5 spinal taps so she will have to lay around quite a bit for those too. I hope the next entry I'll be writing that Kelly is home. (KH) October 23, 2002 - Just a quick update for yesterday. Her headache pain is coming more under control. She's basically slept most of the day. Dr. Erba once again confirmed they are not due to any masses, bleeding, etc., of the brain. Most likely due to anemia, lack of sleep and food, low blood counts, a multitude of things. She was suppose to get platelets yesterday but by the time I left at 7:00, she still had not gotten them. Hard to get single donor platelets. She will be able to come home when her white blood cell count comes back up. Hopefully, it will be towards the end of the week because they are starting to give her Neupagen which accelerates this process. That's it for now. (KH) October 21, 2002 - Kelly woke up yesterday with an excruciating headache and wanted to go in to emergency room. She called the on-call hematologist during the night who said if the pain got worse, she experienced confusion, her temp rose above 100.5, or just didn't feel good to go in to emergency. They started giving her Dilaudid, which is stronger than morphine, which would ease her pain somewhat but did not completely take it away. Since they could not get rid of her headache and because her temperature kept fluctuating, they decided to admit her. She's had numerous doses of pain medicine and still has the headache. They've given her red blood cells which they felt should have been done last Thursday but decided to wait to see if her blood would build back up without the red blood cells. We thought that would make her head feel better but it didn't. The doctor doesn't think it's the leukemia and is checking for bacteria. Her spinal tap from 2 weeks ago was normal (Thank You, Lord!). She's getting more red blood cells today and also the 2 chemos that were scheduled for today. Hopefully, she can come home tomorrow but only if the headache goes away and her temperature gets under control. So far today her temperature has stayed in the 98 range. Poor Kelly, she describes it as the worst headache she's ever had. Pray she gets rid of this soon. Thanks. (KH) October 18, 2002 - Kelly felt pretty good over the weekend, but as the week progressed and her counts went lower, she once again felt the nausea, vomiting and headache effects of the chemo. The nurses and doctors have told her to go NO WHERE because her counts are so low. We thought for sure she would have to go in for a transfusion yesterday but was finally told that they are only doing transfusions right now that are absolutely, without a question, necessary because of the West Nile Virus. They have no way right now to test donated blood for the virus. We can wait and hope that her counts start to go up soon so she can feel better again. She has to see the doctor on Monday for the next i.v. chemo drip. Only 2 more weeks for this 4-week regimen and then she's on to a 12-week regimen that includes cranial radiation for 12 days straight and 5 spinal taps (ouch!). Kelly takes the spinal taps like a champ. She's a very strong person and we love her dearly. Dave went out and bought a Juiceman. Those things really taste good but Kelly drank some too fast one evening and up it came so she hasn't been able to stomach them since. Hopefully, she'll be able to drink them again because they are sooooo good and healthy. Kelly's grandfather (Peepaw) celebrated his 80th birthday yesterday with family at his house (Kelly is sorry she missed it). Ruth also had a small celebration at Red Lobster for his friends. He got a surprise call from the IRS which turned out to be Ronnie (his nephew and my cousin) in Hamilton, Alabama. That really caught him off guard. He had a very nice 80th birthday. We'll keep you posted. (KH) October 10, 2002- Kelly started her early intensification chemo treatments on Monday, October 7, 2002, which is a repeat of the previous month (a 4-week regimen). Irene has said not to expect her to start feeling better (without the nausea and upset stomach) until we get into the third round. Her counts are down so she has to take the precaution requirements for infections. The absolute blast counts (leukemia cells) are at 0 and we hope and pray that they never return. The nurse has been coming to the house Tuesday through Thursday this week to give her a chemo shot and will be taking blood today. Ruth, Austin and Grant Deljevic came by the house to visit on Tuesday. Ruth bought all of us dinner from Mac’s Restaurant in Saline (we thank her very much). Kelly wants us to also thank the Deljevics for their donation of money. It is hard to make entries everyday into the journal but we will try to make them in a timely manner for we know all of you are concerned for Kelly. We would like to thank everyone for your prayers, calls, concerns, and visits and everyone who uses this website to stay informed on how Kelly is doing. September 29, 2002 - This was the week that the nausea and vomiting that the doctors warned would come finally arrived. Kelly could not keep her anti-nausea pills down, therefore, could not eat for a few days. On Tuesday, rather then getting the chemo scheduled, they changed her to get hydration and an anti-nausea shot. They told us that if she couldn't keep anything down before she left, they would admit her. She drank a smidgen of gatorade but had to come back at 7:30 in the morning for the chemo. We figured they could admit her the next day if it was needed. But I'm happy to say that the shot worked and she was able to eat that night when we got home. She had her last chemo shot yesterday for this 4-week schedule. She doesn't go back until October 7 when she starts the same medications she's had for the past 4 weeks over again. She will also get a spinal tap that day. We are all thankful she is still on track with the treatment. She has her ups and downs, as we all do. Pray that she stays strong. (KH) September 19, 2002 - Well, I can definitely say this has been a week being at the hospital and MAN the things I have learned. Things like you need to keep a list of EVERYTHING! This is our first time being in the middle of a chemo round as an outpatient. We spent 7 hours at the hospital on Tuesday to get blood drawn, see Dr. Erba and get chemotherapy. On Wednesday, Kelly developed a BAD headache again much like the one she had with her spinal but she described it as being worse. She called Dr. Erba and he wanted her to go to urgent care. So, in we go at 3:30 and got home at 8:30. The problem last night though is that she needed platelets but they were not aware of the reaction she had to the 5-donor platelets while in the hospital and Dr. Erba was on a plane going to a conference this weekend (he told us on Tuesday he would be out of town this weekend). We've decided we don't like it when Dr. Erba is out of town. Last night we had a "Russian" accented doctor (female, very nice and sympathetic) that was reluctant to do anything when we told her about the platelet reaction until she researched Kelly's stay in the hospital further. Once the info was found, we heard about the difficulty in getting single donor platelets. YOU CAN'T - they have to be arranged ahead of time. She arranged for a CAT scan on Kelly's head without the dye to make sure there was no bleeding - there was not (thank you Lord). She gave her morphine for the headache and a prescription to go home with and promised to set up the single-donor platelets for today. Kelly came home, took the medicine prescribed and basically passed out but was headache free this morning (thank you Lord, again!). Today, we went in at 8:30 for blood draw and sat, and sat, and sat, waiting for the infusion room to call us. After my questioning why it was taking so long the nurse finally came out to tell us the single donor platelets had to be brought in from Detroit and wouldn't be here until 1:00. But Kelly's red blood cell count was down so the nurse was trying to reach the doctor covering for Dr. Erba so she could get her started on red blood cell transfusion. Within a half hour things started happening. One thing that amazed us though is they were asking Kelly what pre-meds were given when she got platelets. I assumed this info would follow Kelly around everywhere - IT DOESN'T. We are starting to keep a much more thorough journal that we can refer to when they ask us these questions. A lesson learned!!! Please remember this advise if ever you are in this situation. So we ended up leaving the hospital today around 5:00. However, not before my learning how to give Kelly shots. The nurse that came in at 3:30 is awesome (no wonder she's so wonderful, her name is Kelly, too). We had her last week on 9/11. She first had me watch a video, then gave me dummy items for practice. She had me watch her give Kelly the shot and then she had me give HER a shot of saline. What a trip she is - one of the best in the infusion area, of which there are many. These nurses are something else! We've grown to tremendously appreciate them and what they do. Tomorrow Kelly goes in for chemo at 4:00. If needed, she will go in for platelets again on Saturday. So, what a week for the hospital. It's much better than being in-patient though. I'm thinking to everyone out there it must seem to be way too much hospital time, but let me assure you that Kelly is doing everything the doctor expects (with the exception of the headache). If we were not making these visits for red blood cells and platelets at this time, something would be wrong. So, all your prayers are working because Kelly is still responding well to the treatment. She has a great attitude almost all of the time and is battling this awful disease with all her might! Keep those thoughts and prayers going! (KH) September 14, 2002 - The benefit last night at the Wooden Nickel was a HUGE success! Thank you to the many people involved with pulling this off - John and his friends that organized the event, the bands that provided the entertainment for free, the Wooden Nickel management that allowed the event to be held there and donated money earned at the door to Kelly and all the friends and family members that stopped by for the cause and donated. I also want to say a special thank you to Pizza House. They put flyers on food deliveries they made this past week to help spread the word about Kelly's benefit and on Tuesday, the manager dropped off pizzas at our house for dinner. Thank you so much for caring and showing your support for Kelly. We are overwhelmed by everyone's generosity in helping Kelly during her battle with this disease. We truly appreciate EVERYONE'S support and thank you from the bottom of our hearts. (KH) September 11, 2002 - Well, the nausea that the doctor insisted would come during the second round of chemo finally caught up to Kelly last night. The visiting nurse decided to call Dr. Erba today when she stopped by to give Kelly a chemo shot because she was feeling so bad. She had been vomiting since yesterday, therefore, could not keep the anti-nausea medication down, had a bad headache and just felt terrible. Dr. Erba wanted to see her, so Kelly called me at work and off we went to the hospital for 7-1/2 hours. She has a urinary tract infection and was in need of red blood cells but had no fever. He gave Kelly the choice today of: 1) being admitted to the hospital or, 2) go to the infusion center for a good dose of an antibiotic through i.v. & red blood cells and also see if she could keep an oral antibiotic down and if she developed a fever. At the end of the treatment he would see how she was feeling to determine whether to admit her to the hospital or not. Kelly chose the latter and I'm happy to say that she felt ALOT better after the red blood cells and antibiotic got into her system. Thank goodness!!! She was even able to eat around 4:00. Kelly is still on schedule with what the doctor expected for the second round. She is in her ninth day and will probably be officially nutripenic tomorrow. As we were driving home, Kelly commented, "What a difference a little blood will do." She's sleeping now (10 p.m.). I hope she has a better day tomorrow. Keep those prayers going and hope to see everyone at the Benefit on Friday. (KH) September 7, 2002 - John and friends have arranged a "Rockin' Benefit" for Kelly on Friday, September 13, 2002. Check out the Rockin' Benefit link and mark your calendars. Hope to see you there! September 4, 2002 - We have good news to report. Yesterday, Kelly was able to begin the second round of chemo. Thank goodness her liver function counts were all normal. So we spent all day in the hospital yesterday getting hydrated and two different types of chemo. Now she will take an oral chemo every day for the next 13 days and get a shot through Friday and then again Tuesday thru Friday of next week. Then on the 15th day, we go back to the hospital to see the doctor and get the next i.v. chemo. This is a 4-week round that she will repeat one more time. Doctors have guaranteed her she will be nauseous. So she might now be feeling too good these next couple of weeks. Now we have MORE GOOD NEWS!!! We met with the bone marrow transplant doctor today. He says, based on Kelly's diagnosis and evaluating her blood work and information they've gathered thusfar concerning her disease and how she's reacted to chemo, he would NOT recommend a transplant. Says it is more of a risk then chemo. I asked if one of the family members was a match would he recommend it then. He said, "No!" When they evaluate patients, they put them in a good bin or a bad bin. Patients put in the bad bin, are recommended to have a transplant right away. Patients in the good bin have a much better chance for a cure if they stick with the chemo regimen. He strongly emphasized to Kelly that this means she cannot be a goof-off. Apparently, younger patients (around Kelly's age) feel they have the disease beat and stop taking their medicine 8 months into the treatment. This could cause a relapse and ruin chances of a complete cure. So stick with the program. He said it would be long, hard and sometimes very depressing, but if she sticks to it, her chances are very good for a cure and that he is hopeful he won't have to see her again. Prior to the appointment, Dave was terribly curious as to whether Kelly there was a match in the donor bank. The doctor said that sometimes a preliminary search for a donor can bring on some anxiety because there may be 30 matches but there also may only be 3 and why put ourselves through that unless she has to go through the process of having the transplant operation. Dr. Ratanatharathorn (try to say that three times in a row) was very upbeat and encouraging. It was a good visit. (KH) August 29, 2002 - Kelly saw Irene and Dr. Erba on Monday in anticipation of starting her second round of chemo. However, her blood test came back showing a high liver function level so they are giving her another week off. A couple of things could have caused this elevated count. She's had bad headaches since last Friday, which they believe are from the spinal tap. She's was taking vicodin which has Tylenol in it and could affect the liver. She also had methotrexate in her first round that can affect the liver. They switched her pain medication to not contain any Tylenol and have told her to lay flat for 3-4 days. Unfortunately, the pain medicine they gave her was making her nauseated to the point of vomiting. She learned to take the anti-nausea medicine a half hour before the pain medicine. She was FINALLY getting relief last night - thank goodness. I know she's really not been feeling good. She will see Dr. Erba again on Tuesday and hopefully be able to start chemo again. The big bone marrow appointment is next Wednesday so a big week next week. That's it for now. Updates will most likely occur weekly. Thanks to everyone for your thoughts and especially those prayers. (KH) August 23, 2002 - Praise the Lord! He has answered our prayers! Kelly received official word that she is in REMISSION! Thank You, Lord! The doctor gave her a call today with results from all the tests she had run on Monday. Irene told her everything looks good. This does not alleviate, however, the fact that she will be continuing chemotherapy as early as Monday. So keep those prayers going. Thank you EVERYONE for caring so much about our Kelly! (KH) August 21, 2002 - All went quite well over the weekend. Kelly was even feeling well enough to go to the Heritage Festival in Ypsilanti with John and some friends on both Saturday and Sunday. We are very thankful that she feels well enough (after all she's been through) to go places. They also went to see a movie on Sunday. Keep those thoughts and prayers coming. I'm sure they have played a major part in how she is dealing with this. Kelly went to the doctor's office on the Monday, Aug. 19th, and had a spinal tap, a bone marrow biospy and chemo put into her spine. The doctor is suppose to call her with the results on Friday. She was feeling a little under the weather on Tuesday from all this (headache and stomach ache). She bounces back pretty good though after treatments. We can only hope and pray that she continues handling the next round of chemo that starts next Monday as well as she handled the first round. She has a long battle ahead of her but she's one touch cookie (and a sweet one at that). We still think that John is one amazing young man!!! He has been by her side all the way. We are so glad he is a part of our daily lives now. I'm sure he's had a great influence on how well Kelly is handling all of this and we are truly thankful. (DH & KH) August 15, 2002 - Around 12:30 pm the nurse came by to take blood again because it didn't get to the hospital in time yesterday. Kelly seems like she is feeling better today, did the dishes, cleaned and packed her room. She ended the day with a headache and sore jaw, called the doctor and he called in a prescription for her. Pray that goes away. Everyone is eating well we spend a lot of time at the grocery store, no problem there. DH August 14, 2002 - The nurse came in to take blood. Kelly is a little under the weather she sleep most of the day, overall uneventful. Called social security and unemployment to see if she can get any benefits, working on that. Got her a phone interview with SSA on Tuesday for benefit info. DH August 13, 2002-
Another 5-hour day at the hospital: blood drawn, talking to doctors and the
infusion room. Bone marrow and spinal tap next Monday. He's going to
start the next round of Chemo while we wait for the appointment with the
bone marrow team on September 4, 2002. He wants us to hear other opinions
but chances are we will stay on the Chemo treatment. The treatments are
five phases over two years. Kelly
has just completed the first one. The second phase is a 22-day regimen
that will be repeated once. The second phase will take us somewhere into
October/November depending when it is started. The doctors say she's doing
well. She is busy getting her personal business in order, buying hats and
looking at wigs. Was going to get pictures of the infusion room but forgot
to get them, next Monday. I'll get some of her hats shortly. At this point
seems like a long road ahead and a busy one.
Keep praying. (DH) August 12, 2002 - Nurses came to the house today to help with the bandage changes and maintenance to her hickman. John wowed them with his bandage changing skills, he is officially the Master Bandage Changer . (DH) August 10, 2002 - John took Kelly to the hospital to have her blood checked. She was the only patient there but it was a long wait because they had to get the results to see if she needed platelets or red blood cells. They apparently messed up on something because they had to take her blood again. Good news though - she didn't need anything. The tech was concerned about something with her kidneys and called Dr. Erba but he said not to worry. The factor was off because she's on steriods. She and John went to his grandfather's 75th birthday party with the family. Another good day that we are truly thankful for. Her next chemo treatment is on Tuesday (2 types), which is her last with this round of chemo. She will have another bone marrow test on Monday, Aug. 19. (KH) August 9, 2002 - Kelly had her first outpatient chemo treatment. First they took blood to find that her counts are still looking good. Then she, John & Dave met with Dr. Erba and Irene. We must have misunderstood because we thought we were going to find out about the bone marrow today but all Dr. Erba would say at this point is since no one in the family was a match that he would not recommend it. He will know more after she has the next bone marrow test. They still do not see any Blast cells (leukemia) in her blood and they can confirm that the chromosome involved is NOT the "Philadelphia," which is good because it's a hard one to deal with. Kelly is tolerating the chemo treatments very well. (KH) August 8, 2002 - Please don't forget to look at the Benefits & Drives link for location of bone marrow drives. The bone marrow test is a simple finger prick test and you will automatically be put on a national bone marrow registry list. You could be a hero and save someone's life. The drive is for a six year old girl. Dr.Jim as of now doesn't have a donor; his family, friends and supporters will be there. This is very important. If you can't make it to one of the drives, contact the National Bone Marrow Donation Program and donate today. Don't wait for a loved one to need bone marrow before you donate. If anyone has emailed Kelly in the past week please re-email her at jelliebellie522@yahoo.com August 7, 2002 - KELLY IS HOME! Can you believe it? Arrived home last night around 8:45 p.m. Right away went to pharmacy to get prescriptions filled before they closed. Home Med delivered supplies yesterday for the Hickman port and a visiting nurse stopped by today at 2:30 to go over maintenance of the port and to take blood, which we will know results of tomorrow. Kelly goes in for chemo to the Cancer Center on Friday at 10:00. Dr. Erba is meeting with the bone marrow doctors today and will be able to tell us more on Friday about the genetics, whether she will need a bone marrow transplant, etc. We hope and pray she continues to progress well with this devastating disease. I would like to take this time to thank all of our family and friends for your gifts, cards, thoughts and prayers. We feel like our prayers are being answered, but we still have a long way to go. We couldn't have done this without all of your support and love. Thank you so much! (KH) August 6, 2002 - Drs. just made their rounds (after 12) to say there is no reason Kelly cannot go home today. She received Asparaginase this morning and is suppose to receive Vincrystine around 4:30. After that we are out of here. We are waiting for Dr. Erba to stop by. Her counts are still doing good and improving. John shaved her head last night. Looks cute. Nurse just came in to discuss discharge. Looks like it might be tomorrow because discharge nurse needs to get involved. Need supplies for home, learn how to care for Hickman, chemo protocol, etc. (KH) August 5, 2002 - Kelly slept-in until 11:00-ish. Dr Erba came by with blood count results, white cells went from .3 to .9 and normal is 4 but we don't want them to jump too fast. If they jump too fast, it could be the cancer . So what we are praying for today is the counts to come up slow. He is going to double check to make sure the reading is correct. ANC counts went up from 0 to .5. They need to be over 1, these counts are also needed with white cell counts to fight infections. These counts must be up before they will release her. Dr. Erba still is waiting for the gene results of the leukemia. She is going to have Chemo treatments tomorrow. If the double check on her counts are not a mistake, Dr Erba may release her after the Chemo and continue treatments as an out-patient. This is wonderful news and all of you have been part of this success. She has a long road ahead of her so keep praying. She will have more Chemo treatments this week followed by spinal tap and marrow exams. With some luck as an out-patient. We ask for your prayers and continued support. (DH) August 4, 2002 - Kelly didn't wake up until 11:00. Ate her lunch and had to get two units of red blood cells so the pre-meds made her go back to sleep most of the day. Received another shot of Neuprigin which is a stem cell stimulator. Finally began waking up around 6:00. Still feeling pretty good. I would like to give a special thank you to Ruth and Danette and their families for the dinners they have been bringing up to the hospital. They have tasted great!!! (KH) August 3, 2002 - The doctors just made their daily visit. Everything still on track. Hope to see the white blood cells coming back days 15-19. We are in day 12. Kelly is in a great mood. Laughing; joking. Kelly is having trouble accessing her Yahoo email account (she changed her password yesterday and can't remember it). I know that feeling. I've learned to write it down. So anyone that's sent an email in the last 24 hours, please re-send it to kmhatfield@comcast.net. The nurse posted her blood results today and Kelly's platelet count increased and she has not had platelet treatment for two days. This is great! (KH) August 2, 2002 - Kelly feels good, treatment is right on target and doing what it is suppose to do; responding nicely. Talked to Dr. Erba - none of our bone marrow results matched. That sucks! He said they won't determine if she will even need a bone marrow transplant for a few weeks. Doctors are waiting for the bone marrow leukemia gene identification. That will determine what further treatment will be necessary. Information on how you can get your bone marrow typed follow click What Can You Do page. She received a chemo treatment and some platelets and the regular medications. She was on the computer for a while, I'm sure she emailed some of you. I had to leave a little early but she wasn't left alone thanks to you all. She was going to clean up, watch a movie and get some sleep. Sweet dreams Kelly love ya see you tomorrow. (DH) August 1, 2002 -Kelly
had alot of company last night. If I miss your name on the visitor list, please
leave a message. Don't want to miss anyone. All of you have been so
supportive. Your care and prayers for Kelly have been working and are important
to us. She hasn't had time to reply to all of your messages and has only
read part of them, but hang tight. The doctors were in before I got
here so I don't know whatsup. Think it’s going to be quiet, no
chemo until tomorrow. She is sleeping right now; looks like she ate
breakfast but snoozing @ 9:45. Nurse says no changes just letting her
sleep. So when the doctors make their rounds again I'll continue. We got
John up and sent him off to school no slackers here (haha). Talked to
Dr. Erba today everything is pretty stable waiting for lab on our blood he
thinks it’s being looked at by other doctors; will track it down. She will be receiving
platelet's today because of the chemo yesterday.
Kelly was in the shower when the team came by said they would stop by later.
She's eating lunch right now. July 31, 2002 - About 5:40 am had another Chemo treatment, last one until Friday. Kelly got up around 9:00 am few phone calls, nurse came in to see if she was interested in doing a study. She said yes. I looked at her charts, a nurse asked if I had permission from her. I told her to go ask, maybe I didn't have permission. Kelly gave permission. Continuing other treatments for side effects etc. etc. She is handling this very well; good spirits, setting up in bed. Thanks for the email, wishes & visits. Spinal tap test in couple of weeks to determine how she is doing. (DH) July 30, 2002- Kelly was sleeping when I came in this morning a little tired from late night. Doctors made first rounds about 6:00 AM. She had already eaten and back to snoozing when I came in. Talked to nurses about tissue test Kathy I and Amy had, said we are automatically put in a world bank of donors. Doctors made rounds again at approximately 11:00 am. She is having some pain with her Hickman . Dr. Petruzzelli said she is not happy with the placement of it. If she continues to have problems they will have to remove and place it on the other side. She will receive Asparaginase chemotherapy today. They tested her twice to see if she was allergic before given under the skin with a shot. Got her MRI report today looks good. Will continue other treatment as scheduled predisone and some other drugs will figure out names later. John got some meal tickets don't think he has had enough to eat lately (HA HA). He has only gained 10 pounds this past week.(DH) July 29, 2002 - Another good day she spent about 4 hours on the laptop. Everyone was trying to call. Dave Baldwin and I worked on this web site he gave a lot of good tips on how to manage it. Had a few visitors stayed up late. (DH) July 27, 2002 - Has day off of chemo. Enjoyed each others company and that of visitors. (KH) July 26, 2002 - Kelly, the nurse tells us, is officially neutropenic. This means her white blood cell count is zilch so she is very susceptible to infection. Chemo is cancelled for today because the type they were going to give her today is a blood thinner which would reverse all the clotting work they have done with platelets. Blood clotting is improving. No fevers today at all. Did an MRI today because of Kelly complaining of headaches. (KH) July 25, 2002 - Dr. Erba visits and says Kelly is responding well to the chemo. She received platelets and red blood cells today so she was pretty much out of it most of the day because of the pre-meds. (KH) July 24, 2002 - More platelets and chemo treatments today. The single donor platelet yesterday bumped her count from 10 to 59 (a good bump according to the nurse). She went down for a heart scan, which the drs. say is routine at this point. Dave, Amy and I went down for our tissue type test to see if any of us are a match to Kelly's bone marrow. Dr. Erba says that Amy has a 4 in 1 chance of being a match. We hope and pray one of us match. Called U/M to see about getting Kelly's educational leave changed to a medical leave. They will be in contact with us. (KH) July 23, 2002 - Upon our arrival today, Kelly was downstairs having the Hickman port placed. They brought her up around 10 a.m. and she was having back spasms again. Not as bad as the first time but still in pain. They once again administered pain medication that basically knocks Kelly out. They had to give the platelets down there because she was bleeding so badly. Drs. cannot explain reactions to platelets. Decide to request single donor platelets rather then give her the 5-donor platelets and will pre-med her with the pain medications before she gets the platelets to try to alleviate the reaction. She got her first chemo treatment in the evening and another set of platelets. The pre-meds basically knocked her out, which is good. She's not in pain and had no reaction this time. (KH) July 22, 2002 - At 5:30 we get a call from John. They gave Kelly platelets around 2:00 a.m. and at 5:00 she started having chills, vomited after drinking water, and excruciating back pain. One temperature reading was normal but ten minutes later it was 103.7. Drs. gave her multiple pain medications that finally made her sleep. Drs. said that 3 patients last night had reactions to platelets, however, Kelly's was different in that she had a delayed reaction, while the others experienced the reaction shortly after getting the platelets. The doctors advise that Kelly definitely has ALL (Acute Lymphocytic Leukemia) and want to start chemo today. They planned to place her Hickman port in the afternoon but there was a communication breakdown. Kelly was downstairs where the procedure was to take place. They asked her when was the last time she had eaten. Since she had eaten a half hour before being taken down there, they could not place the port. Dread...we are put off for another day for chemo. Larry and I were in the family room eating when we overheard another patient talking about his reaction to platelets and back pain. He was much further into the treatment and had multiple platelets but never had that reaction. Kelly is not allowed to eat fresh vegetables, the peel has to be removed from fruits before given to her because of chemicals, bacteria, that can be on them. Kelly got another bag of platelets and had no reaction (thank goodness). John left the hospital during the day and came back with a bald head. What a guy!!! He's a God-send. We are so happy that he is staying by Kelly's side and helping her to keep a positive attitude. (KH) July 21, 2002 - That 2 a.m. phone call that all parents dread came to our up north cabin today. John Nykiel, Kelly's boyfriend, left a message (couldn't make it from upstairs in time) saying Kelly's in the hospital and we need to call the St. Joseph's Mercy Hospital emergency room doctor right away. Dave made the call. From blood work done, the dr. believes she has leukemia. We pack our things in 15 mins and hit the road for the longest drive of our lives. I was okay driving because I was basically in denial but I had to get to the hospital. When we met with the doctor, reality hit and emotions are in high gear. We've explained that St. Joe's is not a provider under our insurance plan and that she has to be moved to Univ. of Michigan Hospital. We then visited Kelly in her room to get the details of her illness. This past Monday, she was feeling sick and went to the dr. before she went to Vegas on Tuesday because she didn't want to be feeling bad while there. They gave her an antibiotic, treated it like a cold. If she would have thought to tell the dr. about the bruising she was experiencing since 7/4, he might have done a blood test to find information sooner. On Friday, in Vegas, she started getting sores in her mouth and a rash on her lower legs. This scared her so she came home early. John picked her up from the airport and saw her symptoms and decided to drive her to the emergency room (thank God he was smart to do this). They planned to do a CAT scan and had Kelly fasting and drinking a dye mixed with cranberry juice in preparation (approx. 1 gal. of liquid). At 12:30 they come to take her for the CAT scan but when the escort went to get her chart they cancelled the test. We are angry that they put her through the preparation for the test and insisted that the drs. still run it. They explain U/M would probably run another one and theirs would be useless (in fact, U/M has not done a CAT scan at all). I could sense Kelly was not going to get any more care from St. Joe's because of the move so I was persistent in getting them to move her. By 2:00 Kelly was in an ambulance, on her way to U/M where she was put in a large room with 2 beds but because of her condition, no one will be put in the room with her. We leave pleased that she's finally at U/M - a top-notch hospital for leukemia treatment. (KH)
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