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We went for a 2nd opinion.
The director of that transplant unit feels my son should have a MUD transplant now since he has a clone of PNH. The Dr. said any clone is not a good thing considering he is so young, will probably grow at some time in his life. Then possibly wont be as healthy as he is now. Best outcomes happen up to age 20. Since my son is 21 that is him.
Our original doc responded : we don't have a sib match and gvh is always a huge possibility. My sons PNH is under 20%. If his counts come up with ATG / Cyclosporine, Put BMT off as long as we can. My son had ATG in June. No response. The original Dr feels if no response at all, get ready for BMT starting in 10/2013.
On our way out of the office I ran into a lady that I met when we were inpatient. Her husband has Leukemia and had a MUD transplant with a 10/10 donar. Her husband is on hospice dying of grade 4 gvh. She commented " 10/10 HLA means absolutely nothing".
At times I feel we will make it thru a MUD BMT, we can do it. At other times I think wait until they have improved the process and can identify better matches or decrease the gvh. At other times I am just terrified! I hate this. My son was perfectly healthy and felt great the day he had routine blood work and got the new. One thing I know for sure I hate this.
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