Friday, January 29, 2010

Day Zero

Susannah received a bone marrow transplant today, around one PM. The donor was anonymous, and will remain so for at least a year, maybe forever. We know he was male, and in his fifties, and probably from North America. (An internationally shipped bag of stem cells would have been packed in a preservative that would cause Susannah to smell like "rotting garlic," which she does not.) The process, like so much of medicine, involves hanging a plastic bag of liquid upside down and letting it drip (no pump in this case) into her bloodstream. Rather un-momentous in appearance, but truly incredible in impact.

The stem cells meander into Susannah's now-ablated bone marrow, and take up residence. They will (slowly) take over the functionality of her old bone marrow, which means producing her blood. (Susannah's blood type, for instance, will change to match her donor's; she will also lose almost all of her old immune system's “knowledge” of diseases, and need to be re-vaccinated.) Typically there is a long period of squabbling as the new set of cells come into harmony with her body. Susannah finds a new guest-metaphor in this, Shams as the guest of Rumi. (Shams was also, of course, an epically disruptive house-guest. But a beloved one.)

From now on, Susannah is a chimera, an individual with cells that are genetically distinct from one other. (The tree at the top is a botanical graft-chimera, once a popular novelty in English gardens. (The photo is by Simon Garbutt.)) At the moment, since Susannah still has the Hickman catheters, she is chimera-cyborg. Which goes to show you.

This miraculous process is made possible by the generosity of someone we may never meet, to someone they may never meet: a nearly pure example of free-sharing. It is, by itself, an awesome thing to experience. It is also made possible, for us, by a series of particular good fortunes, both biological and socio-economic, which we are very much aware of. Last but not least, it is made possible by six decades of research into stem cell techniques.



Stem cells remain one of the most promising frontiers of medical research, one of the most controversial, and one of the least understood in the popular imagination. It is my impression that the “stem cell controversy” has served as kind of a proxy campaign for the pro-life movement, a fallback line to hold after they lost Roe v. Wade. In all events, the bulk of this controversy only really relates to embryonic stem cells, a point that often seems to get obscured in popular science articles, or even in congress. (A similar and related lack of clarity surrounds cloning technologies.)

That the maintenance and reproduction of our bodies is a task fraught with ethical issues is nothing new. Nor is it new for the up-and-coming technologies to be seen as scary in a fundamental way. This whole realm of technology, we have been told in generalities since at least Humanae Vitae, is a violation of the “sanctity of human life.” But what we saw today does not feel that way at all: it feels like a gift of life, from a stranger to someone who was a stranger to them: an expression of pure love. That experience, too, should have some voice in this unavoidable debate.

For Susannah, today is Day Zero, the beginning of a count upwards as her (new) white blood cell count begins to climb, and the delayed aftermath of the radiation and chemotherapy announce themselves and ultimately abate. This recovery process is often quoted as lasting for a hundred days, but her immune system will take a year or more to recover some kind of normalcy. But now we are counting up, rather than down.


16 comments:

  1. Hi Suzzane,

    I wish you recover soon from this srgery. My brother is all set for his bone marrow in March and I hope it goes on well.

    Hope
    http://www.princetoncryo.com/

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  2. YAY! To the birth of the chimeric cyborg! To the flight of the chimera for eons and eons to come!

    I miss you terribly and will continue to leave inane voice mails on your phone, although I guess this proves that I am also capable of using the internet.

    Thank you SO MUCH for keeping us updated.

    Lots and lots of love.

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  3. Ethan,

    I'm a friend of your mom and dad's from Swat and a friend of your aunt Susan Scott's from Wellsboro. I met you twice when you were very young. Once at Arthur and Phylis Johnson's wedding and once in the Royers' back yard (where Beth R. celebrated the 2 Ethans in her life--- one is my son, Ethan Gafford) in Wellsboro. We still live in Wellsboro and NYC.

    I was so saddened to hear of your wife's illness, but am thrilled that she was able to receive stem cells. My cousin Brooke Ellison has a foundation that supports stem cell research. Brooke suffered an accident like Chris Reeves and his last movie was the story of Brooke's life. My husband and I are both doctors and are gladdened that medicine has progressed so far.

    Beth describes your wife Susannah as strong and wonderful. My thoughts are with you both. I will hold you both in the light.

    With Love,
    Tina Tolins

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  4. Ethan and Susannah, such a beautiful,inspiring and almost peaceful account of the storm you are living through. We join you in celebrating day 1!(and day 2) and will be honored to join the prayer chart with Susannah at center. Our aloha and prayers are with you, Doris Segal Matsunaga and family.

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  5. Susannah,

    I am writing from Tom's account since it seemed the easiest way for me to respond to this blog...

    For the past two nights I have been sleeping on the bathroom floor next to Alex (7) and Jacob (4) since they are sick with a bad stomach virus. As I am lying there I can't help but think of you and your unimaginable health ordeal, and the pain your parents must feel as they helplessly watch you go through it. Yet again I am inspired by your courage and strength and quickly the stomach flu is put into perspective once again. In no time at all, my two energetic boys will be racing around the house again. I only wish your recovery could be so speedy...

    As noted on your prayer sheet, I DO think of you each morning at 7 am. I start each day with a short run around the neighborhood with our lab Cedar, so I take you with me, so that you can get a little exercise and fresh air. Thanks for carrying me up the hills with thoughts of how blessed I am and how much I wish for your good health.

    Know that we are holding you and your family in the Light.

    With love,

    Ellyn, Tom, Alex, Jacob & Cedar Leamon

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  6. Susannah and Ethan, somehow my heart just filled with joy while reading the blog and looking at the photo because of the beauty you are sharing amid such an incredibly challenging time. You two are amazing. Thank you for keeping us posted. Lots of love. My thoughts are of you and with you daily,

    Kelly Bannister

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  7. Susannah - Tom Tritton says "You go girl!" Louise says "I'm working on pelmets and jabots for our new house - should be up about the time you are out and about again so you can come see!"
    Ethan - Your descriptions and queries are perfect. Thank you for the updates.
    Love to you both!

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  8. Ethan, Susannah,
    We've been following this blog from across the Pacific (and in Middlebury too) and are very happy to hear about the successful operation. We think of you and are wishing you further steady progress!
    Hitoshi, Kiyoko & Yuki

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  9. go stem cells go! love from Lara Micha and Saskia. thank you for your thoughtful, philosophical, educational blog. You are both an inspiration and remind me that creativity is one of our greatest strengths. I've been thinking alot about madeline l'engle's book wind in the door - have you read it where the sister goes inside her little brothers cells to help his mitochondria.

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  10. Dear Ethan & Susannah,

    I/we are reading every word and on the edge of our seats awaiting the next blog entry. You are so precious to so many of us.

    With much love,
    Peggy, Shel, Peter, Molly & Jordan

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  11. I love that Susannah looks like the coolest girl skateboarder ever. Chimera power! Free sharing! Love!

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  12. Susannah as a cyborg is a new concept. I will try to absorb it.
    I have one question from the above post...if blood type is not the relevant factor in choosing a donor, what is?

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  13. S & E,

    I hope you're both pulling through this okay. I'm thinking of you often and can't wait for your return. Thank you for the updates, the blog is beautiful.

    Dylan

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  14. The haircut really does rock.

    Go, go, go, New Cells! I'll always lay odds on Susannah for being able to be welcoming to strangers and manage peaceful co-existence. Hopefully those new cells will quickly realize what a wonderful person's body they have been sent to and get down to business.

    Hugs and strength to you both.

    Margaret.

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  15. You are amazing! Xander has successfully prevented me from getting your package mailed, but I've got his number now. We think of you daily and hold you always. Back when we were once young YAF's you gave a message about being a deep well, I picture your new stem cells as little seedlings that are overjoyed at taping into the deep well of your spirit. They find it home, having come from someone who also carries living water in his being. They are so excited to grow and flourish and offer your body cool shade to rest in. Blessings to you.

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