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February 2, 2003 -- Consolidation (Day 7) Katie had her spinal tap on Wednesday, January 29 (which was day 7 of her consolidation phase). She didn't do well with the procedure and the medication this time around. They gave her the happy juice and pain meds, but she was very agitated and wouldn't stay still, which made it difficult for the doctor and staff (and me, since I was trying to hold her down and keep her calm). John is taking the day off this Wednesday (day 14 of consolidation) to help with the next spinal tap. If it doesn't go well this time, we'll have to take her to Children's Hospital for future spinal taps so they can give her general anesthesia. The affects of the vincristine (that nasty chemo that made her joints ache, feet tingle and lose her hair) and the steroids (which were making her very moody, achy and causing her belly to swell) are beginning to wear off. We got some smiles out of her a few days and she crawled on the floor to play with some of her toys. Those good moments aren't lasting too long, because her back is still causing her a great deal of pain. Her belly is still very distended and she's lost more than half of her hair so far. It is falling out rapidly now, so within the next week, it should be almost all gone. We are still giving her an oral chemo that she gets at bedtime. She gets reflux and constipation from this stuff. We're giving her mineral oil to help keep her bowels moving. She still needs to take the meds to prevent fungal infections and pneumonia on Thursdays and Fridays. That's always an adventure. It has a very distinct taste that we just can't mask. As soon as I bring it too her she always says "Oh no, not the yucky stuff again!!. She gets it down, but it takes a lot of tears and juice. We had the opportunity to enroll her in a clinical study, which would start after the consolidation phase, where experimental levels of certain chemo are given at various intervals in her 2.5 year treatment. We opted to go the standard route and not participate in the study. Although being in the study would help other children in the future, the standard treatment is less invasive and will involve fewer hospitalizations for Katie. I'm hoping to get her physical therapy started next week. She still hasn't walked since around Christmas. She is moving around and crawling a bit, though. There has been a lot of interest in blood donations for Katie. For those who may not know, while Katie was in the hospital, she had two red blood cell transfusions and one platelet transfusion. She will need transfusions in the future (due to the effects of the different chemo therapies), but at this point I'm not sure when. The immediate family can not donate blood for her in case she were to need a bone marrow transplant. When we go to clinic on Wednesday, I'll get all the details of when, where and how to donate blood for Katie. |
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