Be the Match: Being change you want to see

This might be a bit of a long story.

Last week, I finished reading Chris Cleave’s Little Bee. I’m going to be working on an adaptation of this novel with Book-It next season, which I’m very, very excited about — but this isn’t about that. Little Bee (or The Other Hand in non-American markets) tells the story of Little Bee, a sixteen-year-old Nigerian refugee in England, and the intersection of her life with Sarah, a magazine editor from Surrey. The back of my edition reads “We don’t want to tell you what happens in this book. It is a truly special story and we don’t want to spoil it.” And I think whoever wrote that blurb has a point — part of the pleasure of the book is the way Cleave slowly reveals the heart of the story — but I feel okay telling you this much:

Keep Calm and Be Bone Marrow Donor.

Grammatically questionable, maybe, but on-point meme relevance. From BetheMatch.org’s Flickr.

Jesus it’s grim.

I mean, it’s about illegal immigration, the horrors of bureaucracy, racism, classism, atrocities, violence, rape, death, depression, grieving, and all of these things are very firmly rooted in the stories of real people and real places, and Jesus it’s grim. So I finished the book in a less than sunny mood. You read about the horrible things and you know they’re happening and you know there’s a very limited amount you can do about them and you feel helpless. You know?

When I got home and went to Tumblr to cheer myself up, one of the first things that came across my dashboard was one of those posts that frequently make their way around my corner of the internet: a post asking for help, in this case for a young man in Ohio diagnosed with leukemia. Michael Hunter is seeking information about his birth family, and hoping to encourage people to join the bone marrow donor registry.

So I finally did! I wanted to do something tangible and positive, and I’ve been thinking about doing this in particular for a long time. As some of my readers will know, my mom was diagnosed with chronic myeloid leukemia when I was a kid and got a bone marrow transplant in 1997. (Seventeen years later, thanks to folks at the Fred Hutchinson Cancer Research Center and an array of great doctors in Alaska, she’s doing well!) My mom was lucky enough to have a good bone marrow match among her siblings, but we knew a lot of people at the Hutch who were receiving transplants from anonymous donors, including a kid my own age in my class at the Hutch school. I’ve been donating blood for a while, but this seemed like a good next step to take, a logical one.

Every person who joins the bone marrow registry improves the chances of a cancer patient finding a match. As is often the case with tissue donation, like blood donation, an ethnically diverse donor pool improves those chances even more. If you’ve thought about registering — or are thinking about it now! — here’s what I’ve learned about the process.

  • You need to be in good health. The medical guidelines are roughly the same as the ones for blood donation in the US (aside from foreign travel deferrals). If you have specific chronic illnesses and have questions — I wasn’t sure about my asthma and allergies, but they’re both mild and well-controlled enough that I’m still eligible. When you decide to register, you’ll be asked to answer a health questionnaire to determine your eligibility, and if you match a patient and are asked to donate you’ll be screened further.
  • Registering costs nothing! You have the option to donate to help defray the costs of registering, but it’s not at all required.
  • Only 1 in 500 members of the bone marrow registry will actually donate. No one is forced to donate, of course: you have the right to change your mind about being listed in the registry, and about donating if you match a patient. Unsurprisingly, though, the registry encourages you to only register if you’re willing to commit to donating to any patient in need.
  • If you register online, Be the Match will send you a cheek swab kit to tissue type you. Which is what I did today!
Snapshot_20140720

No, Be the Match, thank YOU.

The kit comes with four cheek swabs and instructions on how to take your own tissue sample, like you’re on CSI.

Scrub your cheek for ten seconds!

 

Which I . . . screwed up twice because I forgot to swallow before each swab. Oops. Hopefully the two I did remember to swallow before are good samples.

Snapshot 3 (7-20-2014 4-34 PM)

But that’s why you have four swabs!

It was a fun way to kill Sunday afternoon, feeling like one of the forensics people on my favorite crime procedurals while doing something cool.

Chances are pretty slim that I’ll ever be called upon to donate. I feel good about making the commitment, though. When you register and request your testing kit, the site encourages you to share the news with your friends, family, and social network, so they can support you. I know already my friends and family will support me in this if I’m ever a match — so I want to invite more people to join me in the registry.

Every little bit helps.

 

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6 thoughts on “Be the Match: Being change you want to see

  1. Welcome to the club! I joined the bone marrow registry after a very close friend in college started his battle with leukemia during our junior year, motivated by similar feelings. You put it really well.
    I actually got a call about a potential match earlier this year. The next stage is actually pretty interesting–they do an extensive phone interview to get even more info about you and your family medical history, behavior patterns (like IV drug use), etc. then they basically say, “the next stage can take up to six months while we review all matches. If you remain a contender, we’ll contact you for a more current swab and maybe ask you to visit our nearest sister hospital for some blood work. Whether or not you’re contacted will also depend on the fluctuating needs of the patient.”
    And I haven’t heard a peep since.

  2. YAY! I joined a couple months back due to an acquaintance fighting some form of bone cancer. I haven’t been called yet myself, but I hope I can help at least help save one person.

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