Yesterday's blood draw showed Annie's platelets and ANC dropped back to the prior week's levels and her hemoglobin had a little boost from her transfusion. Today we had her bi-monthly doctor's appointment.
Tom and I had decided that we wanted to try a second round of ATG (anti-thymocyte globulin) for Annie instead of pursing another BMT (bone marrow transplant) without a perfect match. Our doctor was moving towards having us consult with a BMT group for treatment options. We have, however, already followed that path and knew where it ended ... with a recommendation to have a transplant without a perfect match. The upside would be a possible cure but the downside is a 30-35% chance of failure, an extraordinarily traumatic procedure and GVHD (graph vs host disease). GVHD means living with a chronic condition often requiring a lifetime on immunosuppressive medication ... hmmm that sounds exactly like where we are now so why go through all the trauma for better blood counts on paper but a similar daily experience? Plus once we wipe out her immune system and replace it with someone else's, it's gone, unavailable to benefit from future scientific progress.
Another consideration was that there were three strikes against Annie's first round of ATG [an infusion of horse or rabbit-derived antibodies to fight against a person's T cells (a part of the white blood cells that attack foreign bodies or, in autoimmune cases, the person)]. First, Annie had the rabbit-derived antibodies and, since her treatment, a paper was published showing the horse-derived antibodies have a better success rate. Second, her immunosuppressive levels were improperly measured after her treatment resulting in a non-theraputic dosage as well as four months of home isolation instead of the possibly no home isolation with a proper response and management. Finally, we, unknowingly, returned her to a home contaminated with a pesticide that all data points to being the cause of the condition in the first place.
Thus, during our meeting, after the doctor recommended meeting with a BMT team, I informed him of our thoughts and asked him to refute our argument. He said our argument was sound, there was no additional information that changed any of our points, that he was comfortable with our decision and that she could start ATG next week.
WHOA NELLY!
Now there's every reason not to delay treatment. Annie is at risk for several life-threatening things to happening to her at any time, being on immunosuppressive medicine is a twice-daily toxic cocktail and staying alive by transfusions isn't a great proposition for a ten-year-old. We're ready, just maybe not Monday morning ready!
Thus we've asked for a week to prepare and, of course, details must be arranged on the hospital's end. We've been through this once so we know a bit about what we're in for but I'll save that for a future entry when I learn of this hospital's specifics.
Periodically I imagine what it would be like to be Rip Van Winkle and just fall asleep, let some time pass, and see how things turned out. Of course then I'd miss all the "good things" that come from facing fear ... but it still sounds like a nice option when considering the weeks ahead.
I'll post as we get information next week. By the way, if you don't want to have to check for entries, you can select "join this site" to the right and you'll get an email when a new entry is posted.
Thanks, as always!
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