Causes Near and Dear: The Bone Marrow Registry

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 is 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 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: 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.

I am sure you guys have some pretty important causes to raise awareness about.  We grievers often do.  Spread the word – leave a comment. 

April 12, 2017

6 responses on "Causes Near and Dear: The Bone Marrow Registry"

  1. Thanks for sharing your story. My dad sadly died a few months ago in his 50s, from complications following his bone marrow transplant to treat MDS, which led to a fatal infection. Bone marrow donation has therefore become my “cause near and dear” too, as I’m very grateful that my dad had a shot at his procedure nonetheless – here in the UK, our bone marrow organisation is Anthony Nolan, who created the following video on donation procedure which readers might find helpful on the topic generally: https://m.youtube.com/watch?v=n_RwDkcEDyE I would also add that an alternative way to support such organisations is through donations/fundraising – for example, Anthony Nolan undertake medical research to try and improve the success rate of transplants, so by helping to support this work you can save a life too.

  2. Thank you for sharing your story and demystifying bone marrow donation. I’m a registered organ donor but bone marrow donation always sounded so painful. I have to do more reading, but am definitely considering signing up as a donor after reading your story. I lost my mom last year and if I can help spare anyone the pain of losing a loved one, why not?

    While we’re sharing causes, I thought I’d put out a plug for the American Foundation for Suicide Prevention (http://www.afsp.org/). I lost my mom last year to suicide and it was absolutely devastating, perhaps even more so because of the silence and stigma that surrounds mental illness and suicide. I am currently fundraising for their 17 mile Out of the Darkness Overnight Walk (http://theovernight.donordrive.com/participant/danijohnson) if any other grievers feel inclined to donate, but really I just wanted to spread the word about the AFSP and the great work that they do. They also have a great score on Charity Navigator (http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=6745#.U0bq36JWgr4), with a whopping 82% of their budget going to programs/services.

    *** Forbidden. Contains links. Request number 49cd18116c8f40c4288cb343cfed950b. Antispam service cleantalk.org. ***

    • Thanks for sharing this, Dani. I am so sorry for your loss. AFSP is a wonderful organization that have done so much to raise awareness around suicide and eliminate the stigma. Best wishes on your Out of the Darkness Overnight Walk!

  3. I hope many people sign up because of your post! I was a donor for my brother who had MDS as well. What a blessing to be able to give this gift. A simple procedure that saved his life. My husband who passed in January 2014 was the recipient of a kidney 20 years ago. I am so thankful that Jerry’s family was willing to donate his organs – thankful for the years given to us because if their gift. (I only know his first name) When my husband died we were able to donate his eyes to give a woman a chance at sight. It feels good to knows part of him lives on. I have signed the donor card and have it in my license.

  4. I’m sorry for your loss. I lost my dad in 1969 from a heart attack when I was 19. I still deal with the grief of losing him and wondering what he would think of me now at 64 and what he would think about my children in their 30’s now and his great grandchildren age 12 and 6. With your story in my heart I am going to look into being a bone marrow doner. I don’t want to be an organ donor because of the stories I’ve heard about how you are treated if you are an organ donor and get into an accident. But this isn’t something you have to die to do so count me in. I so hope I am able to help someone as that is what I do all the time, help others in any way I can.
    Thank you for sharing your story and I pray it reaches many others like it did me. God Bless you and your family.

    • Thank you so much Carolyn! I am so sorry for the loss of your dad – I am sure it hard that he never got to know you kids and grandkids, and that they never got to know him. Thank you so much for looking into the bone marrow registry – it truly is an amazing gift to give, if you ever are a match. I have been on the registry for years and never matched anyone, but I feel like just being on the list does give people hope (or at least I hope it does!). With organ donation, you can actually register online now, which allows you to share your wishes without putting it on your drivers license. Eleanor and I actually met because we both worked providing grief support to families whose loved ones were organ and tissue donors here in Maryland. I have it on my license and have total faith in the system, but I do think the online option is nice because there are so many people who truly want to help others, but remain nervous about having it on their license. Just figured I’d mention it – it still definitely might not be right for you, and organ donation is certainly something you want to feel comfortable with. Take care and thank you again for your kind words. It means a lot!

Leave a Message

Your email address will not be published. Required fields are marked *

Disclaimer

WYG provides general educational information from mental health professionals, but you should not substitute information on the What’s Your Grief website for professional advice.

See our terms and conditions here

See our privacy policy here

National Suicide Prevention Hotline

National Suicide Prevention Hotline - 1-800-273-8255

PhotoGrief

Share Your Snapshot

Grief In 6 Words

Submit a Story to Us

What's Your Grief Podcast

Listen to our podcast