Peter's been pretty perky the last three weeks or so. He played some basketball with a neighborhood friend and actually rode his bike for quite a while last weekend. I had suspected that his counts were probably up across the board.
Well, they certainly ARE up. They are almost exactly at the level seen 3 whole years ago when we had no idea he had any issue. I don't believe he DOESN'T have a bone marrow failure disorder. Our hematologist strongly suspects the next-in-line-after-Fanconi diagnosis, a disease called Dyskeratosis Congenita. It comes with many of the same issues and anomalies as Fanconi, but the underlying genetic defect is different. We hope to test him for DC in a few weeks, once we verify that Medicaid will cover the testing. It's not cheap. The doctor said that while he hasn't actually seen a case of DC, before there was genetic testing, that would have been the presumptive diagnosis. Average life expectancy for a person with DC is mid-to-late 20s.
So my head is spinning right now. If these levels persist, then I want to get Peter back into regular gym (he's going to scream bloody murder!) I already told him that his blood is back the way it was 3 years ago, and that means there's no reason for him to feel weak and shaky any more. He completely balked at this idea, no doubt because he's really enjoyed having the "Monday morning shakies" almost every week for the past few months. No more shakies! We're going to have to talk to the school nurse and ask her not to send him home so readily if he has the Mom-made-me-go-to-school-on-Monday-but-I'm-going-to-come-home-now shakies. I'm really glad we have been keeping his life as normal as possible. It made sense.
I feel odd and awkward about the events of the past 6 months. I followed the best medical advice I was given, and that advice told me to contact Make a Wish and hospice. Now there's a tree growing in our local park for a boy that could be here in five years. Or maybe not. This is all so hard to grasp. I DO want the genetic testing, because if it is DC, that gives us a much better sense of Peter's trajectory. And then shouldn't we return to our plan of starting hormone treatments so that Peter can go through puberty? If he's likely to live for several more years, or even a decade, then he needs to become a man. He shouldn't be a permanent 4th grader with a little boy's voice. He deserves all the dignity we had originally wanted for him.
We have a comfort blanket and a comfort shawl from a dear friend at SPICE, to help both of us go through the challenges that were facing us. Now I feel like a charlatan, like the mom who cried wolf! But I saw the numbers, and the direction they were going. Peter's sugar was a little high but not in the diabetic range in October of '10. But his blood counts were already low enough for a diagnosis of aplastic anemia. And his biopsy -- only 5% cellularity. How long can a kid live with only 5% of his bone marrow? Oh, this is all so darned hard! Do we dare celebrate? And that tree -- can I drive by the park and not feel embarassed that it's there?
Sometimes even the best news makes a person cry.
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