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Old Tue Nov 8, 2011, 12:02 AM
cfutia22 cfutia22 is offline
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Join Date: Nov 2011
Location: Skokie, IL
Posts: 1
5% cellularity and new diagnosis

Dear all, I'm new to the forums and I'm hoping some of you can give me some input on an important question I have.

Facts: My youngest son, 17 (adopted from Kolkata, India at 6 months) has just been diagnosed with Dyskeratosis Congenita, a rare genetic bone marrow failure disorder. About a year ago a routine CBC showed severe pancytopenia and a subsequent bone marrow biopsy showed <5% cellularity. His counts were very low across all 3 lines. A few months later, after losing weight and becoming very weak, he was diagnosed with severe diabetes. Once the diabetes was treated, some of his counts came up. He is now just below normal on white cells and ANC, just below normal on hemoglobin, and his platelets have been very low but stable at 25.

My son has no biological relatives and we will not put him through a bone marrow transplant with an unrelated donor (even if one could be found). In addition to everything else, he suffers from mental retardation and reactive bipolar disorder, moderately controlled with medication. Hence no androgens or other treatments that could disrupt whatever stability he has (and ruin whatever quality of life we've been able to achieve). We are comfortable with our decision for palliative/supportive care only under the circumstances. He will live as a "normal boy" until he isn't anymore. We'll minimize hospitals and procedures and continue maximizing happy everyday life.

So where am I going with this? This is my question, and no doctor seems to want or be able to address it. HOW LONG CAN SOMEONE LIVE WITH 5% CELLULARITY? In one way, it really doesn't matter, because my son will live until he can't anymore. But for the rest of the family, it's helpful to have a sense of timeframe. Should my older son continue living at home or move into his own place? If his brother only has a year or two left, he'd rather stay. So help me, folks. Can people live years and years with such a low cellularity? Is it possible that the 5% could continue working this effectively for a long time?

Christine
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