Polly Mayer

I want to ramble about resilience, and the power of the human spirit and the need to connect.  My fourteen-year-old nephew received a bone marrow transplant yesterday. Since September 2008, after a year of chemotherapy for Acute Biphenotypic Leukemia, including a 56 day stint in the hospital last year, he is now at “day zero.”

Actually, today is “day +1.”  The 11 radiation treatments, and two days of cytoxine –euphemistically referred to as “conditioning” — blasted out all his old bone marrow up to yesterday, day 0.  He received something called IVIG, to which he had an allergic reaction, and something called R-ATG, which is derived from a rabbit.  Apparently the rabbit version is easier on the patient than the horse version (h-ATG).   C. found the rabbit tough going, and commented,   “if I can’t even take on a rabbit what am I going to do with human[stem cells?”  leading to the timeless quote from one of his doctors, “rabbits are different from humans.”

C. enjoys ribbing his nurses, especially the young, pretty ones—but he also thrives on human contact.  He has an acute eye for what he calls “newbies” whether in the form of doctors or nurses.  Yesterday, when the transplant team, the lead doctor and the three duckling-like residents, came in he even threatened to grill them or sautee them.  Last fall in the hospital, a nurse assistant gave him empty syringes to hide in his bed after filling them with water, and he would squirt unsuspecting nurses as they came in to check his vitals.  There was also the memorable lemonade in the urinal moment, and the monster mask event.

C., a weapons aficionado, likes target-shooting and Guns and Ammo Magazine.  A vegetarian since age five, he tells me he would never kill any living thing, but “I’m just interested in guns.”  The paradox confuses me, but seems to make sense to him.

Unfamiliar nurses (fairly few since he’s been in treatment for a year) he interviews to find out how long they’ve been working and on what units.  He has a special favorite nurse, and wept when he found out he might not see her for a few days.  He told me that she wouldn’t mind being an ER nurse, but that she stays on oncology because she likes him.

But we were unprepared for the brutal side effects of this “conditioning” regimen, during which, — here’s the resilience part — my nephew never lost his sense of humor.  He had punishing headaches, where Dilaudid was the only relief.  When the head stem-cell doctor came by and asked him how his headaches were, he said, “it just walked in the room.”  She now refers to herself as “C.’s headache.”

One of the doctors he met last year, who is now on the head of the kidney team, has promised to visit him every day.  These connections mean the world to him, and help to make the ordeal more bearable.  The night before transplant, we talked for hours about family, how he could stand to be in isolation for three months, what projects he might take on in that time.  He wept in anticipation of the loneliness, and for what he calls “my lost childhood,” although we agreed that it was more like two years of teenage-hood, and not, as my husband drily pointed out, always the happiest time of anyone’s life.
This brings me to the miracle that transpired yesterday.  The gift of bone marrow  arrived from a complete stranger (all we are allowed to know is that it is a 39 year old man, and judging from the card, someone who is quite religious), a brave stranger, who endured 50 needle-sticks in each hip under general anesthesia, in order to give a person unknown to him a chance at  life.
I went out to see the cooler in which the two bags arrived.  It was singularly ordinary—a typical ribbed orange plastic with a white top— but it emanated power.  The doctor said that the donor’s marrow was full of stem cells: they like to perform transplants with 2 million cells, but this had 3 million per part.
When the bag was hung on the IV tree and attached to C.’s central line, I wept loudly.  My mask  (those yellow paper ones) got soaked.  C. peeked up from his bed to see me, looking surprised and slightly concerned.  I regained composure, and my sister and I sat holding each other as the marrow started to go in.  The cells will take about 10 days to 2 weeks to “home,” that is find their way to the center of his bones and begin to produce white blood cells, then platelets and finally red blood cells.  Baring complications, of which there are potentially many, my nephew could have a future by day 60.
He won’t, however, be out of danger from the graft versus host disease (GVH) for at least 2 years, according to his doctor.  But when the new cells begin to show up, “engraftment,” he’s off to a better life.
My sister had decorated his room with the framed letter of encouragement from President Obama, the letter wishing him well from the Illinois State Legislature, and signs that said “Happy Birthday.”  His old birthday was September 11.  We are happy to give it up for October 21, 2009.
Brave warrior child: let the weapons you delight in be the power of your own courageous and resilient spirit.

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