Disappointment

Before I begin this post, I just want to say, one of the purposes of this site is to give other people who are facing a stem cell transplant some background to what it is like. Lesson 1, Things do not go as planned.

Yesterday, Terri and I started to talk about the transplant schedule, where she and then I would stay during the procedure. I would be in the hospital for 30 days (more or less depending on how things go), but she still needed a place to unwind and have a real bed to sleep in. After my stint in isolation we both need a place to stay for another 30 days (more or less… ). We finally got the package from the hospital’s social worker and were looking at our lodging options. It occurred to us that we did not have from the doctor a firm date for the transplant. So Terri calls up our Nurse Coordinator to see what is up, after all, I’ve taken care of the things I needed to do and now its time to go for it.

Why you may ask do we not have a firm date? Because it depends on the donor. I’m really lucky, I have three “perfect” matches. What is a perfect match? Well on the outside of your cells you have these proteins, that are called human leukocyte antigens. And the immune system looks at these antigens to determine you from not you. When looking for a donor they like to have 5 matched pairs of antigens, also known as a 10 out of 10 match. To learn more visit Cancer.org’s short webpage, Allogeneic transplant: The importance of a matched donor.

Our best option was a young male donor, and a 10 out of 10 match. We were ELATED! Our other two 10 out of 10 matches are female. Why would a male be a better match? Primarily, because I’m male, yep its that Y chromosome thing. Apparently, research says there is a statistical difference in overall survival when you transplant female stem cells into males.

Why disappointed? Well… our perfect match male donor backed out at the last minute. I can’t help feeling a certain amount of disappointment, but I am still very, very fortunate. All one can say is, “Oh well” and move on. So we (really the transplant center) is moving on to the next donor on our list. We’ll never meet these people, but we thank them from the bottom of our hearts. Because they give us hope.

Why Hope? Because I have a chance to survive. Without a donor and a stem cell transplant I would die. That much is certain. I have two more individuals who are out there, giving me hope that I will see my children grow up. Hope is a beautiful thing!   Be the Match

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– Mark

2 Comments

  1. Oh mark- I can’t imagine the disappointment you must be feeling. I am so angry reading this… Angry that your donor would be so selfish. Of course they have the right to back out and may have their reasons but still!!! Just for that I’m going to do my best to make sure another five people sign up to be donors- to replace the one that you lost. So keep your head up sir! I’m sending you and Terri positive energy. 😉

    • Adya, I appreciate the support and action in helping others in my situation. I know I am fortunate, actually really damn lucky.. others never find a perfect match. With your help, you have saved another life.