Wait, what? In search of a bone marrow donor…

Wait, what? In search of a bone marrow donor…

After meeting with Dr. Loren at UPenn in March for a bone marrow transplant consultation, we got instructions to get George’s sister tested to see if she is a match for George. Jasmine, the HLA typing Coordinator, sent a test kit out to Liliane and, after searching high and low for an establishment that would actually do a courtesy blood draw, she found one (hallelujah!). She sent in her vial of blood and a copy of the results was posted on George’s My Chart online about two weeks later.

Now, you would think that a sibling with the same two parents would have a great chance of being a good match. But, each person has many HLA markers. Half are inherited from your mother and half from your father, so each brother and sister that share the same parents have a 25% (1 in 4) chance of being a match. Extended family are not likely to be close HLA matches and 70% (7 out of 10) of patients who need a transplant won’t have a fully matched donor in their family.

HLA (human leukocyte antigen) are proteins, or markers, found on most cells in the body. Your immune system uses these markers to recognize which cells belong in your body and which ones do not. A close match is essential for a successful transplant outcome. HLA matching promotes the growth and development of new, healthy blood cells (called engraftment) and reduces the risk of a post-transplant complication called graft-versus host (GVH) disease. That’s when the cells from the donor (the graft) see the recipient’s body (the host) as different and attack them.

In simple terms, a good match would find the donor having 6 out of 10 HLA markers that match the recipient. We found out that Liliane is a 5 out of 10. We were all disappointed that she wasn’t a better match! So, we asked Dr. Loren via My Chart message if George’s sister was out as a match. And here’s what she said…

Wait, what….?

We didn’t understand how she can still be a possible donor. Not only does she only have 5 out of the 10 markers, but she will be 63 years old next month. Why does that matter? Well, because when I tried to sign up on the bethematch.org website to get tested to see if I am a match for George, I was told that I am too old! And I am 6 years younger than Liliane!

So, that is something we will be discussing with the doctor when we meet with her on May 4. Hopefully, we will get a better understanding, because right now, it’s a bit confusing.

We are assuming that Dr. Loren and her team have been searching the bone marrow registry for a match while George is undergoing his consolidation chemo protocols. He received a journal in the mail from the Be the Match organization and a note accompanying it said they got his name from his doctor. The good news for George is that because he is White, he has a very good chance of finding a match.

We are looking forward to the next appointment with Dr. Loren so we can get more information, clarification and find out what the next steps are. We know George has to get tests to make sure his heart and lungs are good, so maybe that appointment will be made on May 4. Stay tuned!

8 responses to “Wait, what? In search of a bone marrow donor…”

  1. Another great blog post, Mary ! Thank you so much for keeping us informed of this journey you & George are on. Well, and that answered my question…Should I register at bethematch.org . Yep, I am also “too old”.

    I know you have been keeping most of this off of Facebook; but would you consider putting together some kind of post about the Registry ? That way your friends could share it and hopefully raise awareness and maybe get some to register as potential donees.

    Love you both.

    Like

    • I sure can! Sorry I didn’t answer you directly about testing to be a match, but I figured this was a more complete answer to your question! We love you for wanting to help George!

      Like

  2. Well that sucks stinky, brown, canal water. What a double whammy, your sis doesn’t match and most of the people you know, are old farts and can’t qualify. I’ll be keeping my fingers crossed you’ll get some good news at your next appointment. xxoo

    Liked by 1 person

  3. Wow. Hopefully just one point off will still work!

    On Tue, Apr 19, 2022 at 05:04 Diagnosis: Acute Myeloid Leukemia (AML). A Journey wrote:

    > Mary Blackwell posted: ” After meeting with Dr. Loren at UPenn in March > for a bone marrow transplant consultation, we got instructions to get > George’s sister tested to see if she is a match for George. Jasmine, the > HLA typing Coordinator, sent a test kit out to Liliane and, afte” >

    Liked by 1 person

  4. Yeah, that’s the sad reality of donor matches. Like you said though, luckily George is at the most favorable end of the spectrum. Even if there are no matches though, there are other options. I’m sure your doctor will discuss if needed. Good luck to George on finding a match!

    Liked by 1 person

  5. I think it’s a great idea to post something about the Registry on FB. Might encourage others to share it and then more potential donors/matches could be found.

    Like

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