Causes Near and Dear: The Bone Marrow Registry

General / General : Litsa Williams


Yesterday was my dad’s birthday. He would have been 68 years old. I was so busy I barely had time to think about it – a quick text with my mom and sister, plans for some coconut cake in his memory, but not much else.  You would think having a tough day pass without a lot of pain or sadness would be a good thing. There was a time in my grief that I would have killed for a birthday or holiday or anniversary passing without bottomless pain. But now, when that happens, it is… confusing.  Of course grief gets easier – you want it to get easier – but it’s hard not to feel guilty when it happens. The pain of grief is a reminder of the love, the closeness. It is proof the person was here and they mattered. With time, grief changes and memories fade.  We grieve new and different things – we still grieve the loss, but we also grieve for the memories we’ve lost. We feel a guilt for letting things slip away.

There is a post I should write here, one that I promise I will write.  It is a post about the bizarre comfort in grief, managing the complicated emotions of grieving the memories we forget, and coming to terms with the way grief changes and transforms. Sadly, I just don’t have that post in me today.

What do I have in me today?  A simple request, in memory of my dad.

My dad died of myelodysplastic syndrome. I know, myleodys-what??? Myelodysplastic syndrome.  I will spare you the boring details of the disease. All you need to know is this: Your bone marrow stops working right and sometimes you die (that is my dad’s story, in ten words or less). On a brighter note, not every MDS story ends that way.  Sometimes you get a stem cell/bone marrow transplant (following a massive round of chemotherapy that kills off all your existing bone marrow cells) and you survive. Score.

The thing about bone marrow transplants is they require one very important thing: someone to donate their bone marrow. And not just anyone – someone who is a match. Matching bone marrow is very precise. It requires a lot more than just matching blood type. It is even more specific than matching someone for an organ transplant. Some people have (relatively) common tissue types, some have very rare tissue types. Though matching is related to your ancestry, there is a good chance that no one in your family will match, with the exception of a sibling.  Even with siblings, the chance for a match is only 1 in 4. My dad didn’t have a match. Our family was tested. Hundreds of friends were tested. Thousands of people were on the bone marrow registry who had been tested, but no one matched. Before a match could be found, my dad got an infection and died.  If you are here you probably know the story well – you have hope, until you don’t. Death comes and it doesn’t seem fair.  Enter grief, stage left.

We don’t ask much around here, but in honor of what would have been my dad’s 68th birthday, I will make one request: Please consider joining the bone marrow registry. Learn about it, at least. 70% of people who need a bone marrow transplant won’t have a match in their family. Hope for these people comes from knowing that people like you are willing to get tested and to donate. It is super, crazy easy to be tested now. Though back in the day you had to give a blood sample, all they need these days is a quick cheek swab. If you match someone and have the opportunity to donate, they will need either a blood sample or a bone marrow sample.  Most donors are back to work and regular functioning in just a few days. It is that easy to potentially save a life, so why not??  Please please please go over to bethematch.org to learn more.

My dad didn’t find a match in time.  I can only hope that, by sharing his story, more people will join the bone marrow registry and fewer people will have stories that end like his. Do it for my dad’s birthday. Do it because it is Donate Life Month. Do it because you’re bored. Do it because it feels good to give. Do it because it is the right thing to do. Do it to impress your girlfriend. Whatever. Just do it.