Diagnosis: Acute Myeloid Leukemia (AML). A Journey

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…

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!