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We go to NIH in mid-October for another bone marrow biopsy for Mia. I intend to bring the Newsletter and ask him specifically about it.
Hey, I'm all for no drugs...and if she starts to falter we can put the drug back on...but he was the one who said to me "I was the one who wrote the taper schedule in the first place..." because UCLA, Standford, and all my other AA friends out there going by the book that NIH wrote were appalled that we were doing it so fast. UCLA (where Mia gets treated/overseen on a regular basis) was very much opposed to doing it....we had a few tense appointments, but I DO feel very confident in the hands of the doctors at NIH.
Besides, if all these huge teaching hospitals don't have the funds to document what their AA patients are doing out there -- how are we ever going to find some common denominators? Most of these facilities only have one or two AA patients a year!
Candy
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Candy, mother of Mia age 17, diagnosed SAA January 2009; treated with ATG (Rabbit) in 3/2009; treated with ATG (Horse) in 10/2009; Finished a fast taper of cyclosporine (recommended by NIH on 9/7/2010). So far, partial response.
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