I got some discouraging news Friday. The HLA (human leukocyte antigen) testing showed that neither of my brothers is a match for me for stem cell donation. If you want to read more about HLA matching, you can look on the Be The Match website.
This is the worst news since my chromosomal testing put me in the highest risk group of AML, the group with the lowest rates of survival. I need a stem cell transplant to have a fighting chance, and these transplants are more successful when the donor is related.
But whatever. Now I know my brothers won't work as donors, I'm like a free agent. I get to go shopping around in some database for a donor who best suits my immunological needs. Well, my doctors get to do that. I hope there's someone out there for me. Or maybe some donated cord blood for me. I'm told the likelihood of finding a match depends a lot on ethnicity. Apparently white people like me have the easiest time finding a donor because there are so many white registered stem cell donors. The people who have the hardest time are of mixed ethnicity.
If you are of mixed ethnicity, you should totally go on the Be The Match website, order a swab kit, and register as a stem cell donor! Or if you are of any ethnicity, you should do the same thing! Or if you're inspired by my story specifically, you should do the same thing! If you're curious, I'm Eastern European and half Jewish-ish. ;-)
In other news, my skin continues to peel off. A cloud of skin dust appears every time I remove an item of clothing. I slather lotion on several times a day but there's no stopping it. Check it out.
This is the worst news since my chromosomal testing put me in the highest risk group of AML, the group with the lowest rates of survival. I need a stem cell transplant to have a fighting chance, and these transplants are more successful when the donor is related.
But whatever. Now I know my brothers won't work as donors, I'm like a free agent. I get to go shopping around in some database for a donor who best suits my immunological needs. Well, my doctors get to do that. I hope there's someone out there for me. Or maybe some donated cord blood for me. I'm told the likelihood of finding a match depends a lot on ethnicity. Apparently white people like me have the easiest time finding a donor because there are so many white registered stem cell donors. The people who have the hardest time are of mixed ethnicity.
If you are of mixed ethnicity, you should totally go on the Be The Match website, order a swab kit, and register as a stem cell donor! Or if you are of any ethnicity, you should do the same thing! Or if you're inspired by my story specifically, you should do the same thing! If you're curious, I'm Eastern European and half Jewish-ish. ;-)
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| Me, my brothers, and I. I look really happy. |
I think my stem cell test kit got lost in the mail. I'll go reorder it. Sorry to hear that you didn't have a match in your brothers.
ReplyDeleteIt's weird that your skin keeps peeling. What the heck? What kind of lotion do they have you on?
This skin business... foreshadows the reveal of your comic-hero superpower?
ReplyDeleteMorningstar senior living? We need to know more about that.
ReplyDeleteWas thinking about you today Sarah. Went over to ask Gonzo if there were any updates and he pointed me here. Our family is praying for you. -kevin strawbridge
ReplyDeleteSarah so sorry to hear that David and Daniel were not matches for your bone marrow. Someone out there has to be! I think I donated cord blood from my children but I don't know if that would help you specifically. We are still praying for you everyday here in Cincinnati, even if your skin is shedding more than a snake! The Christmas picture is hilarious!
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