When Paul Simon’s album Graceland came out, it instantly became the soundtrack of our house. I was 13, and even though it was my mother’s favorite music, I liked it too, and still do. I didn’t pay much attention to the lyrics until I was much older, but one especially vivid verse always jumped out at me: “Medicine is magical and magical is art/Thinking of the boy in the bubble/ and the baby with the baboon heart.”
Even though I heard those lyrics, I never thought much about the boy in the bubble, indeed had no idea what actually caused his death. Casual references to him were all over the media in the early 1980s, a cultural touchstone, and I find (now that I’ve looked him up) he was just a year older than I. He suffered from a severe, congenital, hereditary immunodeficiency disease—hence the bubble. And he could potentially have been saved by a bone marrow transplant; in fact, his parents’ faith in the developing technology of such transplants influenced their decision to have him, despite the high risk that he would have the disease from which their first son had already died.
His sister was not a perfect match for a transplant, and but by the early 1980s, advances made it possible to try a transplant with a less-than-perfect match. It failed not because the transplant was rejected, but because undetected Epstein-Barr virus in the donated blood triggered massively growing tumors, a fast-growing cancer caused by his intended cure.
The magic of medical science has advanced an awful lot since David Vetter, that boy in the bubble, died in 1984. Now babies with his condition can usually have a transplant in their first few months of life; they need not grow up surrounded by plastic, as Vetter did. (He saw Return of the Jedi at a special screening at a movie theater that could accommodate his chamber.) Transplants use stem cells now, not bone marrow, and are far more available to a wide range of patients and less brutal.
Still, the other day a friend whom I was telling about the transplanted casually remarked that Brad will be the boy in the bubble, and it does feel like he’s headed into one. I feel that way even though Brad’s severely compromised immunity post-transplant will last a few weeks or months, not all his life; he won’t need an inflated plastic chamber to get around. (That said, he probably won’t see The Force Awakens, which our recently Star Wars–obsessed younger daughter desperately wants to watch, until it’s streaming somewhere and we can see it at home.) His hospital room, however, will be an isolated air chamber with a kind of reverse flow, behind double doors. There’s a sign on the outside of the BMTU (Bone Marrow Transplant Unit, even though now it’s really mostly the stem cell transplant unit), in bright red, saying how critical air quality is for their patients. It’s all a little terrifying, and that’s just at the hospital, where they have controls and protocols and heavy-duty antibiotics to combat any stray bacteria.
And where the kids can’t go, while he’s on the unit. Our girls and I are already bracing for missing their dad, during that long month and a bit when they won’t be able to see him except via FaceTime, but I am wondering if it won’t be even harder after he’s home, when they will still be kids and he will need to be kept as isolated from them as possible. We are doing our best to keep our home environment as clean as possible, now and to develop good habits: hand sanitizer stationed at every door, no shoes in the house, no friends over because we don’t want to bring in any more germs than we have to, lots and lots and lots of hand washing and reminders. (If you’re local, and you visit in the next year, we will give you hand sanitizer and I might ask if you got a flu shot. I apologize in advance.)
As much as the space and immunity bubble that we want to build around Brad, I feel like we’ve gone into some kind of strange cancer bubble of a more emotional sort. I feel different, apart, from a lot of the rest of the world; things have shrunk down to caring for Brad and getting through his treatment and illness, with the central fact of our existence being his cancer and the main thing we care about being his recovery. Everything else is slightly filmed over, a bit blurred and distant, as I imagine the world might be if you looked at it from inside a wobbly, iridescent soap bubble. In truth, I’ve deliberately gone into a bit of a bubble of my own this week, though a more permeable and obviously more metaphorical one. I have been so tired this year, not just physically but also, even mostly, emotionally. And the biggest test of all, the marathon, the transplant, is still coming up. So this week I decided to sleep in, to stay home, to stand down on most errands and Christmas shopping and hustle and bustle, and rest as much as I could.
This month is a waiting game. We are counting down: to Christmas with the girls’ Advent calendar of tiny sparkly things each day, but mostly to the transplant. Every day brings it a little closer. Every day, I am both terribly scared by what lies ahead and terribly grateful that our bubble will be temporary and that it stands a good chance of working. Brad needs medicine to be both magic and art; how lucky we are to live in an age of miracles and wonders.
4 thoughts on “This is the age of miracles and wonders”
Beautifully-expressed. We are friends of James’ and we are so glad he can be a match for Brad. Our son, Jordi, went through intensive cancer treatment in 2013. We understand some of what you are going through and you are totally justified in being insistent on the hand sanitizer and whatever else will protect Brad and give you some control over a very overwhelming situation. Sending magical healing vibes your way.
No words. HUG. HUG. Hug. HUG.
Kate – you are an inspiration! Sending you much love & strength
Kate, if it wasn’t for the topic, I’d applaud such beautiful writing. You are such a strong person. I’m thinking of you and Brad and the girls and wishing you a happy christmas despite all of this. xox, L