Hi #Team Sam — 

Just wanted to give you all an update. Friday January 6 the stem cell team called to say John, Zack and I could get our HLA typing blood draw done. So we all quickly mobilized to do just that: Zack and John went together and I went a bit later.

HLA means Human Leukocyte Antigen.  Antigens are proteins on the surface of your cell membranes that help your body tell the difference between “self” and “non-self.” 

For stem cell transplant, they look at 10 HLA markers. By definition of being Sam’s parents, John matches 5/10 and I match the other 5/10. Siblings can match 100% (1/4 chance), 50% (2/4 chance) or 0% (1/4 chance).

Sidebar: I know that kidney transplants look at 6 markers but I’m not sure how those relate to the 10 that are considered for stem cell transplant. I was trying to find info about it before I wrote this but couldn’t totally sort it :).  

We met with Dr. Klein, our stem cell doctor, on January 11 and found out that Zack matched 0%. While on some level this is disappointing, we are actually glad that this happened as we were concerned about such a young child being given that level of responsibility (even though we know he’s a strong-minded, strong hearted human).

We found out today, with a serendipitous waiting room meet up with Dr. Klein, that there are at least 4 people in the world that match Sam 10/10 (called “MUDs” or Matched Unrelated Donor). Time is of the essence though and sometimes donors quickly respond and get their blood drawn and have it sent to the warrior’s hospital, and sometimes it’s a slower process. The warrior’s home hospital has to test the potential stem cell donor’s blood to confirm that it is in fact a 100% match before proceeding.  Once that is confirmed, the donor will have further steps to take to get their stem cells ready for transplant. 

And Sam’s mutation, being what it is, means it’s especially important to have as short a time frame as possible between the end of the blina medicine and the beginning of the stem cell protocol. 

But if the donor(s) aren’t able to do this quickly, haplo related donors (me or john) are still a great option and we are right here, sitting on go, ready to jump in. 💪🏼  And Stanford is known for their haplo-donor expertise, so we are in great hands.

If you are in the age group 18-40 and are able, Be the Match is a great organization that networks with other similar institutions worldwide to help match donors with patients. It’s a simple cheek swab to be included and you could save a life. Be the Match particularly needs people of color to join the registry. If you are younger than 18, you can pre-register to be a donor (with your parent’s permission) when you turn 18. 

#FULeukemia

#TeamSam