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August 20, 2004 -- Maintenance #5 (Days 21-30) Katie had another fever of 100.2 a couple of nights after we got home from the hospital. She also had signs of a cold -- sniffles, sneezing and a runny nose. I spoke to the oncologist on-call Thursday night (August 12) and she told me to check on her for a couple of hours to be sure her fever didn't go up. Katie was still on Clindamycin (antibiotic for her mouth sores), but it's not a broad spectrum antibiotic, so if her fever went up we would have had to take her back to the ER. Fortunately, her temp didn’t go any higher. On Sunday afternoon (August 15), Katie started getting a rash on her face and chest. It looked like two different kinds of rashes -- a raised, individual, fluid filled rash like chicken pox and a flat, clustered rash. We spoke to an oncologist and she told us to go to CHOP's ER. John and I were in a panic because chicken pox is life threatening for kids on chemo. The resident (low on the scale of experience) and attending (head doc) doctors couldn't determine the cause or type of the rash. They weren't ruling our chicken pox, but since she didn't have a fever, they sent us home and told us to go back to the oncology clinic in the morning. They said that illnesses with kids on chemo will present differently than "normal" kids and we should have an oncologist look at her. Needless to say we got very little sleep that night. By Monday morning (August 16), the rash was everywhere on Katie -- on her scalp, palms, in her ears, eye lids and eye lash line, on her lips, in her mouth, on her privates, between her toes, bottom of her feet -- everywhere. And, her face was swollen from it. We were back at CHOP again and Katie was put in isolation in the oncology clinic. We had several nurses and two attending doctors (Drs. Leahy and Felix) look at her. They said it probably wasn't chicken pox, but again they weren't sure. Neither doctor had seen a rash this bad. They also said it may be a rash from an undetermined virus since she had the runny nose and low grade fever prior to the rash breaking out. They ran a CBC. We were told to give her Benadryl for the itching and return on Wednesday (August 18) for her scheduled appointment with Dr. Jill. Katie had her IV vincristine on Wednesday. Her rash and itching was almost gone by then. Very weird. Dr. Jill thinks it was a viral thing. Katie has been feeling a bit cranky and tired, which is normal for her after getting her IV chemo. Her ANC went up to 1829, so we were able to get her back on her daily chemo. What a relief!! This was probably our last routine visit with Dr. Jill. We have decided to go back to the satellite oncology clinic in King of Prussia when it reopens in September. Katie also had her bone density (DEXA) scan after her onco clinic visit and they found that she is a -2.2, which means she has low bone density and will probably need something to help boost it. I still need to consult with Dr. Dormans and Dr. Jill regarding what we can do. After her appointments, we stopped to see her friend Isabel who is still inpatient but should be getting out soon. Isabel recently relapsed (came out of remission) for the second time. We also wanted to visit Jessica (I met her mom from ALL-kids listserv), but she was still in inpatient isolation for chicken pox. Our prayers are with both these kids and their families. Get well and get home soon!!! Katie will be starting school in a month. I'm a bit nervous about it. I've been getting as much information together I can so that the school, teacher and parents of her classmates have a good understanding of her illness, limitations, and emergency procedures. We should be meeting with her teacher over the next couple of weeks. Katie has been enjoying all of the emails, guest book messages, cards and visits she has had over the past several weeks. We can't thank you enough for keeping Katie close to your hearts and in your prayers. We deeply appreciate it. Here is Katie's ANC and chemo/meds since last update: August 16, 2004: CHOP clinic for rash. ANC 1200, Take Benadryl for itching. August 18, 2004: ANC 1829, IV VCR at CHOP. Reintroduce chemo/meds at home -- 25mg (1/2 tablet) 6MP every evening, 7.5mg (3 tablets) MTX weekly on Wednesday evenings, 2mg DEX 2 times per day for 5 days (start August 18 in PM, end August 23 AM), 1/2 tab Bactrim 2 times per day for 2 days (Friday through Saturday), 1 Tums daily or 1/2 Viactiv daily, 1/4-1/2 tsp Zofran every 8 hours or as needed for nausea, 1/2 capful Miralax as needed for constipation/hard stools. Return in 1 week (August 24) for CBC. IV VCR at KOP clinic on September 15. |
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