Here’s a little bit about how I ended up on the Bone Marrow Registry and ended up, after that, getting the call that I match someone. It started about six or seven years ago, actually….
Someone asks the question…
The story begins sad, I have to say. Maybe six years ago, a relative’s wife’s father had leukemia and needed but couldnt find a marrow match from a blood relation. It was time to turn to non-relatives, even strangers.So the daughter sent a mass email to people far and wide asking us all to get tested; maybe we could be the match. I barely know my own relative in this, or his wife, or her dad – though I’d met the man a few times. He seemed like a very loving father and husband. It was a horrible situation.
Given how serious it all was, I didnt feel I could say no. And I didnt want to. I knew that both my brother, Alex, and Amy, his now-wife, were already on the list – they had known other people who needed a match. I knew from them it was an easy and good thing to do. So I thought, I can do this, too. It’s really the least I can do, in fact.
Getting on the Registry ….
So this was test one. All I did was take the commuter rail to Boston and the Green Line to Dana Farber Cancer Institute – in the massive Longwood medical area in Boston. You give a bit of blood, fill out a few forms, that’s it easy peasy – well, for me, given I have no kids to get a sitter for and didnt have fulltime job – or actually, at that point, maybe I didnt have a job at all! If I recall correctly, I made a day of it and saw some sites.
If youre thinking, “I dont have time to go to Boston.” Well, nowaways, it’s even easier!! You can go online and get a kit SENT TO YOU and just send a cheek swab (you can play CSI!) and send it back in. I mean, how easy is that? Then you’re in the registry and if someone needs you- you’re there! And if not, you didn’t even need to leave your house- no harm, no foul.
So, the start of this story is sad because the man who needed the transplant didn’t live. I dont think he found a match, but he didn’t make it in any case. Very sad.
Years go by then, a call and Confirmatory Testing…
But, cut to a few years later- I get a call from the National Marrow Registry social worker letting me know I might be a match for a little boy who had a horrible sounding cancer. Would I be willing to go back to Dana Farber, do another blood draw for a more specific kind of testing and see if I could help this kid. Duh!?
So this was test two. This second drawing of blood is called confirmatory testing.This just means the doctor looking for a match for someone says “This looks interesting…” but needs more blood to get more info. For me, it was just a matter of going in to Dana Farber, getting a couple vials of blood drawn , and heading home. So, I did that. I was amazed by how quick it was, how easy, how painless, and how well the social worker explained everything.
The odds here are better than the 1 in 20,o00. If you’re at the confirmatory stage, there’s a 1 in 12 chance for the patient that you and he or she will match.
In this case, it wasn’t in the cards. In a few months, I get a letter saying I wasnt the best match for this kid. I dont know what happened to him – I think they had found another match. I hope they did. I was also told I might get another call some day because now that my confirmatory tests were on the books, so to speak, doctors looking for matches for their patients have more info about my biological makeup.
Third Time’s the Charm….
And now cut ahead more years. I get a call, actually a message I may be another person’s match. Whaaat? Again I get the gender – another male- and disease – a blood disorder that can lead to leukemia. Again, this was totally out of the blue, totally last thing I expected. I call the woman back, and learn it’s the same easy drill- go into Dana Farber in Boston, get the confirmatory testing, see what happens. So that was test three. The only notable thing here was that I dropped my laptop on the sidewalk on the way there and dented it lol. And I had really bad veins that day and the blood guy had to have a nurse do the draw. My veins have issues.
So time goes on and Im thinking “Eh, no way Im a match. It just doesnt happen that way.”
And then, about 60 days after the test, I get a call:
–Bingo: I’m a match!
-The patient’s doctor has decided to go for the blood stem cell type of donation (I’ll get into this at a later time) instead of the actual bone marrow type– so it will be a blood transfusiony thing not a day surgery. Bonus bingo.
-The doctor wants me to donate on May 10th (this has been switched to the 11th. This means I’ll have to:
-go to get a physical and chest xray in at Dana Farber in April
-five days before the transplant, get a shot in at Dana Farber, and then 4 more from a visiting nurse at home.
-go back into Dana Farber for a several-hours long donation process, possibly over 2 days. No staying over there required, though.
And I get alot of specifics about all this, followed by a big info packet, complete with dvd! And another call from a social worker to set some stuff up. ( I will blog about these different things as they transpire for me and you can read about it all here.) And that’s how we got to this stage.
I guess the point I’m trying to make here is – it all starts with a swab that you can mail in. At most, if you’re a match, you’ve then got to take four trips to Dana Farber – just four little trips over several months- and give someone a shot at beating a disease we wouldnt wish on our worst enemy. I feel like this is a pretty good deal. Best deal I’ve been offered in a long while.
So, consider getting on the Registry, or at least poking around www.marrow.org
Thanks for reading!