Thursday, December 15, 2022

On being a bone marrow donor... 'Tis the season

 

 HALLIE EPHRON: On the day after Thanksgiving, "How to Save a Life,” an op-ed piece that my sister Delia Ephron wrote, was published in The New York Times. In it she shared her experience receiving the bone marrow donation that cured her of acute myeloid leukemia (AML is a blood cancer, a disease of thee marrow which produces your body's blood supply). 


The same the disease killed my sister Nora ten years ago. AML also killed my dear husband Jerry. He had a transplant. It gave him a fighting chance, but it wasn’t enough.

Delia remembers facing frightening odds when she was diagnosed and given four months to live. A bone marrow transplant held out the only hope.

She says, “A bone-marrow transplant, for the patient, is a grueling procedure that involves wiping the diseased marrow clean with powerful chemotherapy and transfusing stem cells from a healthy person who is genetically matched. But for the person who makes the donation, it is not difficult."

Her essay describes how
Be the Match and organizations like it (there are more than 50 worldwide, and they all cooperate) enable people to register to become a marrow donor.

Delia says, “You can register and never get called, or one day, with thrilling unexpectedness, you will get a phone call, as my donor Casey did, to tell you that there is an extremely sick person waiting for you to save his or her life.”
The prognosis is best when the donor is young, and doctors are most likely to request a donor under the age of 34.

To register, visit the web site (BeTheMatch.org), complete a brief form, and receive a kit in the mail. Swab the inside of your mouth as instructed and return the swab in the envelope provided. It's super simple

Donors aren’t paid, but organizations like Be the Match cover all costs, reimburse for lost wages or expenses during donations, and arrange for everything like a checkup to make sure donors are healthy.

Since the Covid pandemic began in 2020, the number of people who have registered but then refused to donate when called has risen. It's unfortunate but understandable. But as a result, right now there's even more of an urgent need.

I’m sharing this information in the hopes that in this season of giving, you can share it with someone who might give the gift of life to a stranger.

Quoting my sister: “During the holidays, if you are under 40, register to be a blood stem cell donor. If you are having a baby, donate your umbilical cord to a cord blood bank. Talk to your OB — umbilical cords, rich with lifesaving stem cells, are otherwise, as one of my doctors put it, thrown in the trash. 

"Give these gifts to a stranger. That’s the holiday spirit. If you have children or grandchildren in their 20s or 30s, when they ask you what you want for a present, tell them that you want them to register. Tell them that, for the holidays, you want them to save a life.”

55 comments:

  1. I'd like to think that we'd all do whatever we could without hesitation to save another person's life . . . .

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    1. I'd like to think that, too. I registered to be a marrow donor decades ago and have never been called. Now I've aged out...

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    2. Hallie, I have a close friend cured with a bone marrow transplant. Thanks for the reminder. I’ve just shared your story on Facebook.

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  2. This gave me shivers, Hallie. How wonderful Delia was cured, thanks to a stranger. I will pass this along to my thirty-something children and their wives.

    Also, is there a genetic disposition to this disease? It's so strange two of the four of you sisters were diagnosed (even stranger that Jerry had the same disease). It's not something one can "catch," right?

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    1. You know, I once asked that to my seatmate on a plane who was a physician and he said, "it's a virus." And left it at that. Maybe someone else reading this knows. My understanding is that some do have a genetic predisposition to it. For others, not.

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    2. My sister did an internship at Sloan Kettering. She is convinced cancers are catching. Why some people get them and others don't may be a genetic predisposition or perhaps even a temporary one; no one knows. I registered decades ago, but was never contacted. I think I may have re-registered when Rod Carew's teenage daughter died of leukemia. They couldn't find a match for her because she was half Black Panamanian and half Jewish. I felt so sad about that.

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  3. Hallie, thanks for the eye opening blog. I am a bit too old but I am going to repost this everywhere. If one person registers because of your blog today, what a triumph!

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    1. Wouldn't it be! And I hope anyone out there who's pregnant will consider donating to an umbliical cord blood bank. Completely painless, one and done.

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    2. Should either of my sons' wives become pregnant, I will urge them to do this.

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  4. Thanks for this important message, Hallie. I have shared this post on my FB page. And I want to recommend Delia's memoir Left on Tenth, which I learned about on this blog (earlier this year?). It's is a powerful read. The Ephron sisters sure can write!

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  5. Hallie, I read Delia's piece when it was published, and was very moved. I wish I weren't overly aged.

    I will join Judy in helping spread the word.

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  6. I never registered to be a blood marrow donor, but I did donate umbilical cord blood after both of my kids were born.

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  7. This post is a wonderful public service, Hallie. Thank you. Wishing you a peaceful holiday season (except when you are around your grandchildren, when I hope it is appropriately raucous).

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  8. From Gillian: thanks for this important message. I signed up years ago, but never received a call. I’m delighted that your sister recovered, and saddened by the losses. We lost a friend a few years ago to this horrible disease.

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  9. Hallie, is there a way to read the essay for those not subscribed to the NYT? Thx.

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    1. Edith, since I subscribe, I can give you all this gift link. Consider it my Christmas present to you all.
      https://www.nytimes.com/2022/11/25/opinion/leukemia-bone-marrow-transplant.html?unlocked_article_code=zcncQtxX-Ps0VBOiFl4D3uzqUdTBHdIYQ_k1uGONUva5vC2Wc5vzwN5JemWzE2MRR1aY86TCV3nqALKw0vSx2bTOmkZrAukkagRyFUJhu2SLhOny3IAuSp3-N5x2v5MR-OFUrUA0pvm4FVVZTJATn4KkelFrw8nCtbnkX0AWoq1r3-hBLoZHAeJZmNZNOlY2-RXgFfavnx_vmLX5TMUxe16NYBIZoZljGgAmKe9lb_NJu8EFo3gs1PI2TXQs0Mncy5xG-e_t918tfXn-aJXmsh5q0O8HtgLWXMC43JSLlWwfOmmDmK4h3ITrPxfNRkdzqg78JUZTWNNA58SgUpKXpm7w2tYGp2OFLw&smid=share-url

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    2. Thanks, Karen! I didn't knowone could do that. I have a subscription, too.

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    3. I didn't realize the link was so darn long! You might have to delete spaces to make it work.

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  10. "If you are having a baby, donate your umbilical cord to a cord blood bank. Talk to your OB — umbilical cords, rich with lifesaving stem cells, are otherwise, as one of my doctors put it, thrown in the trash." How is it that the mother has to specify that her umbilical cord be donated? Why doesn't the blood bank do an outreach program with the hospital to collect the umbilical cords?

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    1. I suspect because it's part of the mother's body, and therefore it's up to her to decide what to do with her own cells.

      Which is ironic, considering the recent efforts to strip bodily autonomy from women. One of those unintended consequence situations.

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    2. Good guess, Karen... what a tangled web we weave...

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    3. I suspect is less about permission of the Mother and more about the bottom line. Unless there is a non-profit around to run a cord donation program, it will not exist! Mainstream hospitals will not assume the costs associated with such a program.

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  11. Science is so remarkable! I'm so sorry that I am too old to donate and even my children are all over 40, but the word does need to be spread so I'll do all that I can. I had read Delia's book after seeing it talked about on a Sunday morning news show.

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  12. Powerful blog as was your sister’s piece and her book,Left on Tenth. Knowing the sorrow when a family member or friend is lost and the joy when there is success, makes the importance of these written pieces and actions that help people one doesn’t know even more important. Debra H. Goldstein

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  13. I'll add this on my Facebook as well. I registered as a bone marrow donor years ago; I didn't actually realize I had aged out. I will also mention for people who are thinking about testing to be donors that anyone between the ages of 18 and 60 can become liver donors; it's one of the easiest donations because amazingly, the part of your liver removed grows back!

    In addition, many of you here know my daughter Victoria aka the Maine Millennial, donated a kidney this fall. Kidney donation has no age limit! When the two of us went in for her pre-surgery visit, the NP told us their oldest donor so far had been 83.

    There's so much that we can do to literally give life to others. I hope everyone considers the possibility.

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    1. Thirty years ago my cousin donated a kidney to his dad, my uncle by marriage. Unc is still going strong, although in his early 80s now, and with other health problems unrelated to the kidneys. My cousin is still very healthy, too.

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    2. Donating a kidney (or liver) seems truly selfless and brave. I am in awe of the Maine Millennial and Karen's cousin.

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    3. I am so in awe of Victoria, Julia. Her generosity is inspiring. I know you are proud of her.

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  14. Around 2000, when my partner's cousin was saved by a bone marrow transplant (and he's still doing fine, thanks) my partner and I both registered as potential donors as a kind of payback. But they dropped us when we turned 60 (!) Now, the max age seems to be 35. Even more restrictive, but I guess they have their reasons.

    Meanwhile, at 72, I'm still a persona grata with Canadian Blood Services. They'll keep on taking my blood as long as I want to--or can--give it. I assume it's the same in the US. I'm just throwing this out there for anyone who feels the urge to donate, but can't do the bone marrow thing.

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    1. The registry that I am on has no upper age limit! Matches are as important as the age of the donor!

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  15. I remember my college roommate's father was a bone marrow donor and he had helped save a little boy's life. I was incredibly impressed by it then (still am). Sadly, I have aged out but my Hooligans are on it! Great post, Hallie and Delia!

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    1. Sadly most of us don't know about being a donor until someone close to us get sick and needs a bone marrow transplant.

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  16. I’m too old to register, but I shared this to Facebook.

    DebRo

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  17. Thank you for this reminder Hallie. What a wonderful thing it is to save a life. Even those of us who have aged out can still specify that all our useful parts are donated at our death For starters, we all have yards of skin that can be used for burn patients. No one ages out

    I haven’t read Delia’s book yet but it’s in the pile. I agree with whoever said those Ephron sisters can write!

    Much love

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  18. I just spoke with the registry where I am a member. They do not cite an age limit because just because you are above 40 does not mean you cannot donate bone marrow. If you pass their physical, which many over 40 do, then you are eligible to donate. People in their sixties routinely donate bone marrow. A match is as important as the age of the donor!

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    1. THANKS for the correction - I did not know that.

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  19. Such a moving and important post, Hallie. I'm going to pass along to my daughter in hopes that she can share with younger friends.

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  20. Oh, Hallie, I had no idea at how deeply this awful disease has affected your family.

    Folks - a zillion years ago when the earth was cooling, I was on the marrow donor list. When I got the call I was pleased to go and discovered, much to my relief - THE DONOR HAS THE EASY PART. Aside from a bit of soreness in the hip - no side effects at all. Do not let fear and horror stories keep you from signing up.

    Oh, and as an adjunct PSA - give blood. One pint can save so many and - especially important at the holidays - a pint is a pound the world around - so - give that pint and reap the benefits on the scale :)

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  21. I donated a kidney to my youngest sister back in 1985 and I am alive and kicking, thriving, and as mean as ever. Just ask my husband.
    On another note, check the box to be an organ donor on your driver's license. Consider it along the lines of having a will. It is a "just in case" for the inevitable.
    Thank you Hallie for informing people of another way to share life and joy.

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    1. Wow, Pat. Something to always feel good about.

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  22. Hallie, I am so sorry that AML has hit your family so hard. I'm happy for Delia's return to good health. Your message today is such an important one, and I thank you for sharing it.

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  23. Thank you for this post. I'm too old to donate but I will spread the word. I, too, am sorry your family has been so deeply affected by this disease but glad Delia has responded well to the treatment.

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  24. How profoundly inspirational. Thank you Hallie..and Delia. (and a pause for a memory.) Yes, we will all amplify! It's so heartbreaking, and so necessary to spread the word.
    Kait! I'd love to know more about the reality.
    And coincidentally, I just read an article about this which says:
    "Kiia (the potential recipient) is most likely to find a match with someone who shares her ethnic background.
    *Be the Match* – an organization that helps facilitate stem cell transplants – says Black patients are the least likely to find a match.
    Their U.S. donor registry includes about nine million people. But only 8% of them are Black."

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    1. It was easy peasy. This was the late 1980s so there may be some variations in the hospital time, but my donation was a local one so no travel was involved. I checked into the hospital the day before, stayed overnight, the next morning I went into surgery, they gave me anesthesia that was that. When I woke, I had a sore hip and I went home the next day. No biggie. I'd do it again in a heartbeat. I had friends at the hospital and I later heard through the grapevine that my recipient was a young boy and the transplant was successful. I don't think we had HiPAA then so this wasn't as shocking as it would be today.

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  25. Oh Hallie, I'm so very sorry about how devastated your family's been by AML. I've followed your sister Delia's story, and of course Nora's, too. Then grieved with you over Jerry's death. Because of what I refer to as my "checkered pharmacological past," I'm ineligible for many donations. However, in the event that some parts prove useful, I've been registered as a donor (with the pink dot on my driver's license), and have arranged to have my body donated to Stanford Medical School when I die, so I can be of some use. My husband is also a registered donor, and for years has been a blood and platelet donor, especially valued because of his O neg/CMV neg blood type. Preemies and folks with compromised immune systems benefit from his donations. His body will also go to Stanford after his death. I love how everyone does what they can, be it registering on different sites to spreading the news about the need for donors. ~Lynda

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  26. Thank you, Hallie. And thank goodness for medical advances. When my niece was diagnosed, with aplastic anemia (life-threatening), she couldn't find a blood donor match even among family but fortunately alternative therapies have evolved and she's fine now.

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  27. An excellent article. Would it be possible to make one addition to it. For people who are Chinese or Asian/Americans and I’d imagine other ethic minorities it can be impossible to find a bone marrow match. I know one friend who’s family held events to attract more Asian, Asian American marrow donors because her cousin desperately needed, in this case I believe stem cells and as there wasn’t a family match they needed a donor and there weren’t many. There hope was, that even if it didn’t give him the help he needed others would benefit.

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