Ryan was re-admitted yesterday because his marrow showed 43% "blasts" - immature lymphocytes. The goal of the initial 32 day regimen was to bring the count way down - normal marrow has ~5% blasts. So he didn't achieve the goal of the first regimen. This puts him in a higher risk category, and means he will most likely need the marrow transplant sooner rather than later.
The MRI last night was normal - meaning there is no hematoma from the LP and his bladder dysfunction is probably temporary inflammation due to the intrathecal chemo. Since the initiation of mega-dose steroid therapy he is able to urinate today, but it's not completely normal yet.
He started the first of 4 chemo treatments given at 12 hour intervals this morning, to be followed by 3 more days of chemo with a different drug (don't know the drug names off-hand. More on that later).
I went on the 5th grade field trip to Boston today and went to the aquarium and IMAX with MeiLin. Even though the bus was full of excited and noisy kids, it was nice not to be driving that long drive. I have a neighbor whose daughter needs frequent visits to the children's hospital there - I now see how draining this trip must be for her.
Tomorrow I'll contact the transplant unit at Dana Farber and find out how they want the siblings tested. I think they said it would be by buccal swabs, which will be much easier than blood work. Two days ago, I thought the marrow transplant was a year down the road. Now it looks like I can scratch that idea.
My sense of euphoria over Ryan tolerating the first chemo so well is gone. Apparently his cancer tolerated it well, too.
Today was the girls' last full day of school. I will probably need to start taking people up on all those gracious offers to watch the girls beginning next week. The following 6 weeks they have a day camp sponsored by our town - for $120 apiece they get bussed to the camp from 9-3. Good deal or what! The following week MeiLin has a basketball camp for two hours a day, and they have some other half-day things like Chinese camp in July.
With everyone else in the family working, I will need to be at the hospital more. Sophia puts in an 8 hour day, then goes to visit Ryan. She is a real trooper. Still I worry about her being so far away from family and friends with only us in-laws for support while she deals with all this.
---Barb
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