Kelly's Get Well Site

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July 23, 2003 - Today was spent in the emergency room.  Kelly got up around 6:00 with an unbearable headache.  The doctor started off by giving her meds for migraines but that didn't help at all so they decided to do a spinal tap.  We are so happy to say that everything looked good - Thank You, Lord!  At 5:00, we were finally on our way home minus the headache.  Kelly started her next month of prolonged maintenance with another deviation to the schedule.  She gets her blood drawn on Mondays, as usual, then takes a neupagin shot.  Based on if her counts are low or normal, Dr. Erba will have her take either a half dose or a whole dose, respectfully.  So we'll see how this goes.  

July 9, 2003 - Kelly's counts were down last Monday but were up this Monday.  FANTASTIC!  She had to give herself another Neupagin shot last week to get her counts up so she could continue the chemo.  This week her white blood cells were 2.4 and neutriphil 1.2.  YEAH!

June 24, 2003 - Kelly's counts are down again but not quite as low as before.  Dr. Erba's office called saying her neutriphil is 1.0.  They want her to take a neupagin shot 24 hours from the last chemo pill she took and go back in for a blood draw to see if she can continue with chemotherapy.  We love the fact that Kelly is feeling much better - even went to cousin Nick's graduation party this weekend - but it's scary to not be following the protocol that Dr. Erba has for ALL patients.  We have a tremendous amount of trust in Dr. Erba though.  He's known nationally for treating leukemia patients and we've felt comfortable with him all along.  I truly appreciate all the people that have said to me, "Kelly is on our prayer list" or "Kelly is in my prayers."  Rev. Nelson and his wife, who were so much a part of Dave's youth, have been calling periodically to express their concern and to let us know that they continue to pray for Kelly and our family.  I truly believe that these prayers have helped our family to get through this life-changing ordeal that we experiencing.  Please keep those prayers going!

June 17, 2003 - Kelly saw Dr. Erba last Monday and her counts were still down so he wouldn't start the chemo.  Gave her a neupagen shot and told her to return on Wednesday to see if her counts went up.  Of course, we have the questions as to why is this happening and what can be done about it since he says this is an important part of the treatment.  Dr. Erba believes it could be two things - Kelly having a history of low blood counts and her having a deficient enzyme gene which does not flush the chemo from her body as it would if she didn't have this deficiency.  I'm happy to report that the neupagen shot worked.  Her counts were up on Wednesday so she got the Vincristine and the other 2 chemo pills and the steroids.  She went in this past Monday and her counts were still up so she was able to continue the treatment so far this month (YEAH!).  This morning she woke up with a sore throat.  She had to go in to get checked out and they put her on a antibiotic.  Hope they kick in soon so she doesn't have to suffer with the sore throat.  Counts were still up today.  She gets her blood checked again next on Monday.  Pray that they stay up.  

June 8, 2003 - The prolonged maintenance has been good in the sense that Kelly has been feeling better and able to do more things.  She went golfing one day (about an hour), shopping, mowed grass, out with friends.  However, her counts have been down for the past couple weeks.  So far down that Dr. Erba has stopped her chemotherapy.  She was even told to take neutripenic precautions last week.  So this is pretty scary to us.  She sees Dr. Erba tomorrow so we are looking forward to this appointment.  We have much hope in how well she's done so far through the intensive treatment.  Her hair is beginning to grow and she started not wearing her wig when she goes out.  She's beautiful with those baby blues!  

May 22, 2003 - Happy Birthday, Kelly!!!  She (We) really have reason to celebrate!  Her counts this week were normal except for platelets being low.  The family is meeting at Red Lobster to celebrate this evening.    

May 7, 2003 - As I reflect on the past couple weeks, I must say things have calmed down to what life used to be.  Kelly for the most part is very tired.  Still sleeps a lot and has headaches every now and then but she's taking the meds the neurology doctor gave her and they seem to work, which is great!  Dave and I finally felt comfortable in going up north together.  This was the first time I returned up north since that fatal call saying Kelly was in the hospital with leukemia.  It was rough thinking about everything that happened then, but I'm glad that's over.  We had an enjoyable weekend celebrating our 26th wedding anniversary.  Kelly was unable to go to the dentist today because her neutriphil count yesterday was only .8.  She goes to see Dr. Erba and Irene on Monday so we'll see what they have to say about this past month.  Kelly's birthday is May 22nd.  She will be 23 years old with many more birthdays to come!!!   Happy Mother's Day to all you wonderful ladies out there!

April 26, 2003 - Kelly felt pretty good most of the week.  Her neutriphil count on Monday was at a 1.1, which is good.  She goes Wednesday this next week instead of Monday because she has an appointment to get her teeth cleaned but if her neutriphil is not high enough, we'll have to cancel.  

Her Grandma got a picture of Nikka when she visited Kelly at the hospital the last time she was in and gave it to a woman that does paintings of animals.  Grandma and Grandpa stopped by on Thursday to give her the painting and it is beautiful!  Looks just like Nikka!  During the visit Kelly told Grandma that she thinks she's starting to feel like a normal person.  Yeah!!!  

Happy Birthday to Ruth and Mackenzie (Kelly's aunt and cousin)!!!  We enjoyed celebrating their birthdays with them last weekend and hope they had a great day today!!!

April 19, 2003 - Kelly is still in remission!!!  She had her doctor's appointment on Monday and started the prolonged maintenance round.  She was given Vincristine through an i.v (once a month).  Her neutriphil count was still low .5 so Dr. Erba is having only take half doses of 6-mecaptapurine (every day of a month) and methotrexate (14 days during a month).  She's also taking a steriod (5 days of a month).  This will be what she's on every month now until July 2004.  Dr. Erba is perplexed by the low blood count but feels Kelly's blood normally runs low.  He even talked with a pediatric oncologist about her but they had never seen this problem before either so he couldn't make a suggestion as to how to proceed either.  Instead of just going in every 2 weeks for blood draws, Dr. Erba wants Kelly to come in every week until he sees how her body reacts to the treatment.  I'm happy to report that one of the medicines that the neurologist gave Kelly actually took away her headache.  Yeah!  This is better that she actually has a medicine to take her headache away rather than just take a pain pill to cover up the headache.  

Amy participated in the American Cancer Society's Relay for Life last week with Pizza House.  We had two candle bags decorated for Kelly.  Great job, Amy, and for a good cause. (KH)

April 12, 2003 - Kelly had a bone marrow biopsy on Tuesday to make sure she's still in remission before starting the prolonged maintenance round next Monday.  This one seemed more painful then ones in the past but she made it through, unsedated.  Hopefully, she won't need another one until July 2004 when she ends the 2-year treatment schedule.  She also saw a neurologist that would like to get her off of taking so many heavy-duty medicines for her headaches.  She suggested some meds as a preventative and some for when she actually gets a headache but we have to wait until Monday to see if Dr. Erba will approve.  Kelly's basically tired this week.  We went for a walk today, which is good! (KH)

April 5, 2003 - Kelly came home from the hospital on Wednesday night, thank goodness.  Unfortunately, she took a spill down the stairs so her right arm is a little sore because of twisting it.  She said it feels better today.  Kelly had a very nice nurse this visit, Laura Smith.  She even has min pins so she was very excited about Nikka coming up to visit Kelly.  We want to thank her for being so helpful.  We also want to thank Kelly's visiting nurse, Kathy.  She stopped by yesterday after getting a verbal order from Pat and took Kelly's PICC line out.  Kelly's glad to get rid of that and it's a sign that thinks will hopefully get easier for her.  Kathy was very tolerant of our after hour calls.  Kelly has a bone marrow biopsy scheduled for Tuesday to make sure she's still in remission.  She sees a neurologist on Thursday to try to get help with her headaches and then she sees Irene on Monday, April 14, to start the prolonged maintenance until July 2004. Still a long way to go but hopefully the worst is over. (KH)

April 1, 2003 - Kelly is still in the hospital.  The good thing is her counts came up so Dr. Erba said it was okay for Nikka to visit.  It took some effort in getting the proper form filled out by the vet and faxing it to the hospital but we got it done with Kelly's persistence (a sign of feeling better?).  Nikka stayed at Amy's apartment all day so I picked her up after work.  Amy wasn't feeling well so couldn't go with us to visit Kelly.  Kelly was so happy to see Nikka and wanted her back first thing this morning.  Ruth stopped by and played Scrabble with us and Grandma stopped by to get a picture of Nikka that a friend of hers is going to paint.  They stopped the pain medications intravenously today and switched to oral medications different from what she's been taking.  A step towards her coming home.  She had a temp of 100.6 so she has to stay longer.  Her counts are coming up though so hopefully it won't be too long before she comes home.  (KH)

March 29, 2003 - Kelly and I pulled an all nighter on Thursday/Friday.  They told us she was scheduled for a CAT scan at midnight on Friday morning just as I was bringing in Chinese food for her to eat.  Because of the CAT scan she couldn't eat the food and had to drink a disgusting liquid instead.  I wanted to be with her when they took her down because of what's happened in the past with the MRI (leaving her in the hall for 2 hours, vomiting).  Well, midnight turned in to 2:00 a.m.  But they wanted her to drink some more disgusting liquid and come back at 6:00 a.m.  When this was done, it was constant in and out by hospital personnel.  They have been able to control her pain level, thank goodness, and since they said they were going to give her platelets again yesterday (multiple donors) I felt I should stay again because of her having a reaction to multiple donors in the past.  Danette came up in the afternoon to relieve me but Kelly was sleeping so I went home to get some sleep also at around 2:00 in the afternoon.  Today, they still have her pain under control.  They gave her a chest x-ray for the Neutripenic fever this afternoon and plan to give her red blood cells today also.  Dr. Erba said "NO" to bringing Nikka up to see her.  She cannot come up until Kelly's white blood cells come up.  She won't be able to come home, in fact, until her white blood cells come up.  She misses Nikka badly.  I took pictures she recently took of Nikka and I think it made her miss Nikka even more.  Kelly's once again doing Neupagen shots so hopefully her counts will turn around soon.  (KH)

March 27, 2003 - We thought last week was hard, well, it got harder.  On Monday, Kelly's visiting nurse, Kathy, stopped by to draw blood.  A few hours after that, they were calling Kelly to come in to get platelets.  Her neutriphil was 0.0, her platelets were 4 and her hemoglobin was 7.4.  The amazing thing about Kelly though is she doesn't hardly ever complain about feeling bad so it's very hard to tell if she's having a bad day.  She received red blood cells this week also.  On Wednesday, Kelly was in a lot of pain.  I emailed Irene and Dr. Erba and they wanted to see her that morning.  I rushed home from work to take her in.  Thinking she might have an infection they decided to admit her to the hospital so they could manage her pain and give antibiotics intravenously.  This is a rough stay that really has her down.  But I try to encourage her because she's almost done with the bad treatment regimens.  It will hopefully get easier from here on out.  Another thing we had to deal with is Nikka.  Poor Nikka would have to stay in her cage all day while we're working, going to the hospital etc.  So we took Nikka to Amy's apartment since she's in and out most days.  But the nurse Kelly had today said if we get Dr. Erba's permission, we can bring Nikka up for visits.  So we're going to ask him and hopefully we'll be able to take Nikka up to visit Kelly tomorrow. (KH)

March 20, 2003 - This week has been a difficult one.  Kelly began vomiting on Monday so extreme that she called me at work saying she had to go to the emergency room.  I felt so bad for her because it was an extreme case of the dry heaves.  Thank goodness, they got it under control quickly but then she had a headache from all the dry heaving.  She's trying to keep her anti-nausea medications going on a 4-hour basis to have better control of the nausea but still doesn't feel very good most of the time.  She does have moments of feeling good though.  Eric shaved her head again because her hair was coming out in spots so she thought it was better to just get rid of it totally.  She got her last shot for this round today and only has five more days to go of taking the oral chemo.  Then comes the bone marrow biopsy in 2 weeks and start of the prolonged maintenance round.

My parents celebrated their 50th Wedding Anniversary this past week.  We had a small gathering for them at their favorite Chinese restaurant.  I was very nice.  Unfortunately, Kelly didn't feel well enough to go.  We missed her in the family picture but our plan is to get a family portrait made in the near future.  

A special thanks to the professors and staff at University of Michigan with whom I work.  They had dinner delivered to our house yesterday.  I feel very fortunate to be working in a department that is so understanding of my situation and very supportive.  (KH)  

March 13, 2003 - Kelly's not feeling well at all.  Had to go in to see Dr. Erba and he wants her to have a blood transfusion tomorrow.  I think he's hoping it will prevent an emergency room visit this weekend.  He said the infusion room is much nicer than the emergency room - HA!  We agree!!!

March 11, 2003 - Kelly started the LAST 2 weeks of intensive therapy yesterday.  I have a feeling it's going to be a rough ride.  Yesterday she had an iv drip, shot and begins taking oral medication for 2 weeks.  The shots she takes Mon. through Thurs. for the next two weeks and we'll go in for another iv drip on Monday.  Dr. Erba is recommending that she go to a headache clinic to try to get those under control.  We went to emergency on Sunday night because of another bad headache.  We were also in the emergency room on Wednesday night because she had a fever of 101.  Thank goodness there was no infection.  Dr. Erba believes it was the Neupogen that gave her the fever.  She will probably go in for red blood cell transfusion this week.  Her counts are low - Neutriphil was .6 yesterday.  But Dr. Erba is staying on the treatment regimen keeping in mind that her counts are always going to be on the low side.  He's lowered his expectations to .5 to 1 Neutriphil when normally he wants to keep things 1 and above.  He plans to talk to his colleagues about her low levels to see if they've dealt with any low counts.

Kelly is loving Nikka.  She took her to the vet on Thursday and they were giving her tips on the cage to try to get her to not mess in there.  She's so little and young.  Just like a baby.  But has a lot of spunk.  

March 2, 2003 - Once again I find myself apologizing for the long delay in updating the website but Kelly surprisingly has been feeling pretty good for the past couple of weeks, largely due to having to take steroids while getting vincristine and dauxorubicin every Monday for the past three.  Right now she is on a 2-week break.  Her blood counts actually went up to normal after being on the steroids for a week but Dr. Erba said that it's due to the steroids.  They kept on warning that her counts would come down and sure enough they hit bottom on Thursday so she had to start neupagin shots, which she doesn't really like because they make her body ache so bad.  She's also a little emotional today but that's probably because of being off the steroids for a week.  Poor thing has to put up with so many physical changes due to medication.  Kelly has been off of chemo and steroids since Tuesday and will have her next doses of chemo a week from Monday.  They tell her she will most likely need transfusions during the next treatment phase.  Hopefully, she'll stay strong.  I noticed Dr. Erba told her this Monday as he was leaving the room to stay healthy.  We also met Jill Welch's mother in the clinic waiting room on Monday.  She said we are in good hands with Dr. Erba.  Jill finished her 2-year treatment on Feb. 2, I believe, and now she is going to move back to Iowa City.  She was just offered a job also.  We wish her continued luck with her life and hope we can stay in touch via email, etc.

The greatest news for Kelly this week is that she got a puppy.  She begged and pleaded with her Dad via his cellphone while he was in Atlanta this past week.  She didn't bug me because she knew I was hard set against it.  But she got through to softy Dad and they brought home a miniature pincher on Friday.  Dave said you should have seen the smile on Kelly's face.  It was like she was a kid again.  I been able to see her kid smile, too, most of this weekend.  Kelly named her Nikka.  She's only about 6 weeks old and weighs 3 pounds.  She won't get much bigger then 6 pounds (or so they tell me).  I must say she is very cute.  They knew I would give in once I saw the adorable little thing.  Hopefully, we'll have pictures of Nikka up soon on the website.  

February 12, 2003 - On Monday, Kelly had a PICC line put into her left bicep, which will be used to draw blood from one line and give chemotherapy in the other.  They lead the line through a vein going around the heart so the chemo therapy is processed through her blood stream better.  It's also making it so she doesn't have to get poked all the time.  She's not much on the new fashion statement - two hoses with knobs on the end sticking out of her arm but she knows it's better this way and it's only for a few weeks.  When she got to blood draw, they didn't think the line was working because no blood could be drawn out but they only tried one line.  When we went to infusion, they found that one line did draw blood and the other flushed well so she was all set.  Once they determined that she started the heavy intensification round with vincristine and dauxorubicin iv pushes.  She'll also be on a steroid for 14 days.  Jill, the super young lady Kelly met in the support group that completed her 2-year treatment round about Feb. 2 (ALL RIGHT, JILL!!!) stopped by the reception room that day and was saying that the medicine made her really wired.  Irene told me and Kelly that if she begins acting unusually moody we need to call them.  Kelly's neutriphil count was still only .9 but Dr. Erba explained that he was feeling more comfortable in continuing with the chemotherapy because the spinal tap and bone marrow biopsy showed she's still in complete remission.  He also had Irene look back in at Kelly's past medical history to find that in 1999 her neutriphil count was only .9.  This makes him think that having a low blood count is possibly a normal condition with Kelly.  Of course, they have a medical term for a patient that consistently has low blood counts but I can't remember what he said.  Now he is doing an auto-immune blood test to see if that points to anything in particular with her blood counts.  I hope and pray Kelly stays really strong during this round.  It will be a tough one but she's a tough girl.  (KH)

February 4, 2003 -  Yesterday was Kelly's appointment with Irene and Dr. Erba after the hospital stay.  She was extremely weak and tired and didn't have much of an appetite.  You could even hear the weakness in her voice.  Sunday she started feeling better.  Little did we know yesterday that she was going to get both a bone marrow biopsy AND a spinal tap.  The bone marrow biopsy was due because it was the end of the last round, which was suppose to be a bit of a break but she had multiple problems with her blood counts, headaches, not to mention ending up in the hospital with viral meningitis.  The test will make sure she's still in remission, which Dr. Erba assures us will most likely come back okay since her last one on 12/30 was clear.  The spinal tap, her 11th in 6 months and hopefully the LAST ONE SHE WILL EVER NEED was to check for leukemia and also administer the methotrexate that she was forced to skip during the last round.  Next Monday she will begin the 8-week heavy intensification round.  On Monday she goes in to get a pick line put in her arm.  I guess this is a tube with two lines coming out the top portion of her arm so the chemo can be administered correctly into the veins rather then having to go in and get an i.v. put in each time.  After that she will see Dr. Erba and then go to infusion for the first four chemo medications.  Once again we are told she will most likely need red blood and platelet transfusions.  Some of what we've already went through in the early intensification rounds but this one is longer.  Dr. Erba was trying to explain yesterday the results of the metabolism test that he run on Kelly just before she went into the hospital.  I'll try to note the best I can but it gets kind of hairy with the medical terminology.  He's confident that her bone marrow wants to produce correctly because of her counts coming up with only one shot of Neupagen.  But he believes there is an insufficient enzyme in her auto-immune system that's preventing her counts from coming up like they should.  He's a little baffled by it but will continue to try to figure out what's going on.  As a result, he's putting her on a steroid during this round to try to help with her blood counts.  Her  neutriphil count yesterday was only .8.  But Dr. Erba wants to push forward with the treatment.  

It's hard to express the feelings watching Kelly face and go through the intensive treatment for this dreaded disease.  I guess the best way to explain it is a heart ache.  I'm happy to say that she was laughing and joking laying there on the table after the two procedures and took nothing for pain.  She knows the worst part of the treatment is yet to come but she's facing it straight on and wants to get it over with so she can go on with her life.  I hope and pray she will come through these next couple months with as little pain and discomfort as possible.  Thank you for your continued thoughts and prayers. (KH)

January 30, 2003 - Kelly came home yesterday from the hospital.  Danette's timing for a visit was great again.  She was able to bring her home (this happened the previous time Kelly was in the hospital).  The doctors believe Kelly had viral meningitis.  All tests were negative for bacteria, tumors, all the bad stuff, so this is good.  She's still very tired and hardly eats a thing.  This we have to change!   

January 26, 2003 - Kelly slept a lot yesterday.  Yesterday we asked to talk to the floor doctors so Darren and the medical student stopped in to explain what approach they are taking with the results they've seen so far.  One of Dr. Erba's colleagues also stopped by yesterday.  They still have not completely ruled out a bacterial infection but are leaning more towards a viral infection; most often talking about viral meningitis.  Dave looked it up on the internet and her symptoms definitely seem to be that of viral meningitis - fever, headache, neck pain, vomiting.  Darren and the med student ended up giving her another spinal tap yesterday because the neurologists needed more tests run.  We asked if it could wait until Monday so Irene could do it but he said no.  We figured out this was probably her 10th spinal tap and Irene has done all but 3 and she has Kelly lay on her side in the fetal position.  Darren had her sit up in the fetal position and her headache just got worse.  It was a hard time yesterday but she finally was able to get some good rest.  (KH)

January 25, 2003 - Not much relief yet for Kelly's headache and neck pain.  The pain medication works for a few hours but when it wears off, the pain is back.  A neurologist was brought in yesterday to talk to Kelly about the headaches.  With the lumbar puncture and an MRI they will, hopefully, rule out the serious conditions and then begin treating her with a daily preventative medication for the headaches and come up with the drug that works best when she does get a headache at taking it away.  She and I were VERY upset last night.  They took her down for the MRI at 10 p.m. and didn't bring her back up until 1:00 a.m.  They had left her in a hallway, in a wheelchair for most of the time she was down there.  Being the time of day that it was, there was hardly anyone walking the halls so she just sat there.  When they finally took her in for the procedure, her back was hurting so bad the nurse had to go down to administer pain medication so she could lay down.  We both learned a lesson - whenever she has a procedure, no matter if they say you can't go, you DO go.  Someone needs to ALWAYS go with the patient to track someone down because the patient can be forgotten about. Remember this if ever you have a loved one in the hospital.  (KH) 

January 24, 2003 - It's been a tough week for Kelly.  On Sunday she started with a headache.  On Monday she still had the headache and went in for blood draw.  Her counts were down again so they told her to stop the 6-mecaptapurine and methotrexate.  On Tuesday, she started vomiting along with the headache so Dave left work to take her to emergency.  When she came home she said her headache was still there a little but she was feeling better.  She was able to eat and slept until Wednesday around 1:00 but woke up with the headache again.  Around 4:00 a.m. on Thursday, she was at our bedroom door saying she had a temperature of 100.4.  I told her to take a Tylenol and that I would contact Dr. Erba in the morning to see if they wanted to do anything more then blood draw.  I emailed Dr. Erba and Irene to find they were both out of the office but Dr. Erba said he was concerned about her fever and neck pain and he wanted her to go to Urgent Care at 1:00.  So, off we go to Urgent Care at 1:00.  They wouldn't give her anything for the pain because they were doing blood cultures, a metabolism blood test, CAT scan and lumbar puncture.  The CAT scan came back negative so that was good.  The lumbar puncture they were checking for meningitis.  The doctor that did the procedure (around 6 p.m.) said her fluid looked real good and clear but, of course, they had to do the more extensive testing to know for sure.   At this point, they decided to admit her to try to get her pain under control.  Up to 8A, which we like alot better then 8B.  The nurses are much more caring in 8A.  After 3 hours of questions, questions, questions, she finally got pain medicine going around 10:00.  Her temperature was staying normal so I hope she'll be home soon. Her white blood cell and neutriphil counts were higher on Tuesday but had gone back down by Thursday.  I hope they can figure out what is going on with these headaches. Her phone number is 936-8403.  

On a personal note:  Happy Birthday to Kathy Thompson.  I know you'll be celebrating this weekend.  (KH)

January 13, 2003 - First update for the new year and I hope and pray it will be a good one.  Irene reported to Kelly on Friday, January 3, 2003, that the pathology report agreed with what Dr. Erba said on Tuesday.  Kelly is still in complete remission.  So she started her back on half doses of oral chemo, methotrexate and antibiotic.  Dr. Erba thinks it's something with her genetics that makes her extremely sensitive to the medicine.  Kelly didn't have to go back to get her blood checked until Thursday, January 9, but she got a call on Friday saying to stop the medicines once again because her white blood cell count was only 1.2 and her neutriphil count was only 0.5.  Today her counts are up - white blood cell at 2.4 and neutriphil 1.2.  So back on the meds again.  Now she has to go in on Mondays and Thursdays to get her blood drawn but doesn't have to go in to see Dr. Erba and Irene for another 3 weeks.  Wow!  Three weeks without seeing Dr. Erba?  That will be a record if Kelly's counts stay stable and she stays healthy.  

I extend my deepest sympathy to the Newsome and Loveland families for the loss of Debbie, Scott and Mary who were taken in a car accident on New Year's Eve (also Debbie's birthday).  
I will never, ever forget Debbie's beautiful smile.  (KH)