No, my perfect match is not a reference to my wife (and she is totally okay with that). My perfect match is the woman that saved my life on May 4, 2016.
There aren’t many things scarier than having no idea whether or not there is a stranger out there willing to save your life. It makes a person feel helpless, and sometimes hopeless. All you can do is try to have faith that a miracle will happen. A miracle in the form of a selfless stranger, deciding they’d like to save the life of someone they’ve never met.
For any of you reading this now who are still eligible, before I even get into my own personal experiences, I’d like to ask you — I’d actually like to beg you — to join the bone marrow registry, whichever one is most convenient for you. I know that in the United States, Be The Match is a fantastic option and joining couldn’t be easier. Just go to bethematch.com and hit the join button! You will have to answer some questions about your medical history to register to be sure you are eligible, and then be mailed a kit to do a quick cheek swab and return.
I’d like to tell you a bit about my experience, and I sincerely hope that this post can persuade even just one reader to join. To be selfless on the off-chance that you’ll get that phone call and have the opportunity to save the life of someone that needs your help. You might be their last hope.
Without further ado, here’s my story.
For those of you that have been staying up to date on my latest posts, you know that I have had cancer twice in my life. When I was first diagnosed back in 2009, both my dad and my brother were tested to see if either of them were a bone marrow match for me. Unfortunately, neither of them were. However, I was lucky to find out that there was an experimental drug that was being used for my type of cancer (ALL ph+) that had very promising results.
So, instead of a bone marrow transplant, I went on the experimental drug, joined the study, and crossed my fingers. Things looked great. I was in remission in no time, and it stayed that way for quite some time. I had two and a half years of various types of chemotherapy, and then remained healthy for close to four years afterwards.
Unfortunately, I relapsed in December 2015 at 21 years old.
That is why, the second time, I needed a bone marrow transplant. My cancer had been tough enough to come back after the tremendous amounts of chemo I had endured the first time. However, none of my family was a match. So the doctors started looking elsewhere.
Having no clue when or even if I would have a match was truly terrifying. Sure, there is generally a plan B treatment option, but the doctors assured me that a bone marrow transplant would give me my best shot at beating this cancer down once and for all.
All the while, I began chemotherapy treatments (again) to get myself back into remission. The idea was that getting me into remission as early as possible was crucial for my success, and that they would try to find a donor for me in the meantime.
But still no donor.
There were 12 markers in the marrow they were looking for to match up to my own bone marrow characteristics. If I remember correctly, there needs to be at least ten of the twelve markers lining up for it to be considered a “good” match. I do however believe fewer markers than that can be considered an “acceptable” match.
Unfortunately, the doctors were unable to find anyone in the U.S. who was a good match for me.
I was getting pretty close to finishing out my chemo, and still waiting on a donor. What if they couldn’t find one? What if my donor only had a few matching markers? Would that mean I’d have more complications? Would that mean I would relapse again? Though the science behind those thoughts may or may not have been totally accurate, the worries were still going through my head as I laid there in my hospital bed, getting into remission for a bone marrow transplant that I didn’t have a donor for.
That was when my lead oncologist told me the news that would change my life forever. They had found someone. Apparently after striking out in the U.S. bone marrow database, they started broadening the search. The only information that was allowed to be revealed to me is that a woman in Germany came through as a match.
A perfect match. Twelve out of twelve. Which is nearly unheard of unless it is a full sibling. In fact, I don’t even think they could label it as a “perfect” match because we weren’t siblings. But they said it was better than anything they could have hoped for.
I was absolutely elated. To say that the weight of the world was lifted off of my shoulders would have been a massive understatement.
However, shortly after they reached out to her and she agreed to donate, I remember my transplant being postponed for two weeks due to my kidney function needing a bit of time to recover. I had needed a hospital admission along with a crash course of antibiotics due to spiking a fever a few weeks prior. This caused a whole slew of new questions to be tumbling through my head.
Since bone marrow only has a 72 hour window from the time it is taken from the donor to be used in the transplant, my donor now had to wait two more weeks to donate. Not to mention, my marrow had to be flown across the Atlantic from Germany to Boston during this time. I only had a small window to receive the cells as well, since my blood counts had to be completely bottomed out at zero for the transplant to work. Along with all of that, was this selfless stranger willing to wait two more weeks? I was petrified that her answer could be no. Had she used her only day off from work for the original donation date? Would she be able to take another day off for this? Would she back out thinking it wasn’t worth it anymore, and it was too inconvenient?
Being at the mercy of a total stranger is absolutely terrifying. And I had no way of communicating with my donor to ask if she was going to back out due to confidentiality rules. All of these moving parts were a perfect storm to cause an incredibly stressful situation.
But luckily, my transplant date had arrived, and she hadn’t backed out. Everything was still on schedule and good to go, all of the moving parts came together at once, and I received my bone marrow transplant.
I got to live because someone whom I had never met decided that they’d like to save my life.
So please, if you take anything at all away from this post, please sign up for the bone marrow registry, and encourage others to as well. You may never get called, or you might get to save a life.
And I know it might sound scary to think about donating bone marrow. For some it might scare them to think that their hips might be sore. For others, they might be worried about getting sedation for the procedure. But sometimes it can just feel like a blood draw like it did for my donor!
But please, just think about that person laying in their hospital bed, praying to God for someone just like you to give them another chance at life. A sore hip will fade, the sedation will wear off. I am alive today because someone decided to join the registry. I can still hug my family because someone joined the registry.
Stick around for my next post too, and I’ll share with you my story of meeting my donor and my hero — the incredible woman that saved my life!
As always guys, please feel free to reach out to me on my contact page if you have any questions, tips of your own, topics you would like to see covered, or just feel like chatting to someone that’s been through it. I am always here for you.
-Alex
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Featured image is one of my own!