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April 4, 2004 -- Maintenance #3 (Days 36-60) We've gone a full 28 days without a trip to the doctors!!! Yippee!! As long as Katie is well and shows no signs of being sick or low counts, we'll only have to go to CHOP once a month. It's very weird and a bit scary not going more often, but kids on Maintenance should only have to go every 28 days for their CBCs and IV chemo, and spinal taps every 84 days. It just taken Katie over six months into Maintenance to get to this point!! We did have to call the doctor quite a few times when Katie's mouth was bleeding when she bit the inside of her mouth and when she had blood in her stool from her stools being hard. Dr. Jill wanted Katie taken off the daily laxatives because taking them long-term can cause problems. She suggested liquid Colace. I went ahead and ordered a bunch at the pharmacy -- expensive stuff, over $10 for a one ounce bottle and Katie needs to take 1/2 ounce every day! After Katie took just a third of her dose for the day, she vomited repeatedly. The poor thing could not get the nasty taste out of her mouth and was gagging for hours after. I felt so bad for her. I guess I'll be returning the unopened bottles of that yukky stuff!! I'm hoping I can get Katie to swallow the gel capsules of Colace. Apparently, there aren't any other stool softeners that are OK for kids. After Dr. Jill told us to stop giving Katie the Zofran last month, Katie was still vomiting in the middle of the night. We put her back on the Zofran every night with her 6MP. And, Katie's dosage of 6MP has also increased to 50mg every night. Some mornings she wakes up nausiated, so I give her the Zofran in the mornings now also. It's working well at a half dose (1/4 teaspoon), so we will continue with that until we see a need for a change. I was shocked when Katie's oncologist told us that we could have Katie's port taken out at any time now. I assumed we would have to wait until she was done her treatment. My initial reaction was --Great, get rid of it!! Then we don't have to worry about fevers.-- But after thinking about it, Katie would have to get an IV every time she needs her chemo and she really doesn't like IVs (who does). Her port hasn't given us any troubles so far, so we may wait a while. John and I have many, many questions for the doctor before we decide. Katie hasn't lost any more hair. The hair loss she had last month must have been from a virus. It's a thinning and patchy hair loss. But, since Katie's hair has gotten longer, most people don't notice it. Katie had her first haircut at the salon since before Thanksgiving 2002! She was thrilled! She wanted highlights, so Dawn got some styling gel and put it into a bowl and used a "special brush" to brush the "highlights" into Katie's hair. She even used a curling iron to add some extra curls to her hair. Katie was so happy with her new look. When I told her how pretty she looked, Katie looked at herself in the mirror and replied, "I DO look beautiful!!" Last update I mentioned that I was on the publicity committee for the Leukemia and Lymphoma Society's Montgomery County Light the Night Walk. After realizing that the emotional impact of Katie's illness is not going away any time soon no matter how much I try to focus on other things, I've decided to step down from the committee. The time needed to publicize the Walk is far more than I am able to take away from my family at this time. The LTN committee members fully understand and have been very supportive of my decision. I will continue to help the Leukemia and Lymphoma Society in other ways. And, We are still very excited about raising money in honor of "Katie's Wish" and will be participating in the Walk on October 16. John, Katie and I have joined the Gilda's Club of Bucks/Mont Counties. We were in desperate need of a cancer support group. This group has lectures, networking groups, and support groups for adults. They offer cooking classes, arts and crafts, silly nights and support groups just for kids. They also have pot luck dinners each month, different family activities throughout the year and weekly fitness programs to help de-stress. We've signed up for several activities that should be very fun!!! This Tuesday, Katie will be making soft pretzels with other "Kids in the Kitchen". She can't wait!! We joined the ALL-kids.org listserv. It's an email group where parents of kids with ALL can share information and experiences with each other. I wish I would have joined much earlier. It has been such a wonderful source of support! We are not alone!!!! John and I had a date over the weekend! (That sounds so silly.) We went for an early dinner and had such a nice time. We were able to talk to each other!! Of course we talked about the kids the whole time, but it was just so nice to have some quiet and not have to rush through a meal. Katie says she wants to go on a "date" with me next! I promised to take her to see a movie. It will be just us girls. She can't wait!! Kyle is doing great. He has an appointment with a dermatologist at CHOP on Thursday to check his eczema. He only has a small patch on his face, but I want to get him checked out anyway. He started creeping across the floor (pulling his body with his arms). He's so proud of himself when he reaches whatever he's going for. He has "words" for different things now. When he wants me, he says "ma" (and will repeat it over and over), when he wants a bottle he says "bwa bwa", and he calls for his daddy by saying "da". He is such a happy baby. He and Katie have SO much fun together!! Here is a run-down of Katie's ANC and meds since the last update. March 31, 2004: ANC 1484, received IV VCR at CHOP, continue full strength meds at home -- 2mg DEX 2 times per day for 5 days, increase 6MP to 1-50mg tablet every night, 5 tablets MTX weekly on Wednesday, Bactrim 2 times per day on Thursday and Friday, Zofran as needed for nausea and vomiting, 1 Tums daily, stool softener (or laxative) daily. Return in 4 weeks for CBC, IV VCR, LP (lumbar puncture/spinal tap) and IT MTX at CHOP. |
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