This is the age of miracles and wonders

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.

Strike a match

A quick update here: In my first post I said that Brad’s brother James was a match and would be donating stem cells for Brad’s transplant. But at that point the word from the labs was actually that he was a 99 percent match. (This was up from 90 percent after the first round of tests. Everything in medicine seems to take a very long time.) That number was good enough for the transplant team, which started teeing Brad up (their term) for admission in early January, on the assumption that that last I would be dotted and last T crossed in due course. Today we heard it was, and that James is a perfect match.

The odds of any given sibling being a match are 25 percent, so we feel very fortunate that Brad and James are matched. The best-case scenario for a stem cell donation, as it happens, is donation from a younger male sibling. The odds on Brad’s disease and diagnosis have hardly been ever in our favor, but it’s very nice to have one thing that has gone 100 percent his way.

Next step: James comes out here to Sacramento early next week, for a round of tests and physicals to make extra extra sure he’s fit to donate. (We’re sure he is.) It’s hard to overstate what a welcome guest he will be.

The story so far

This blog will track Brad Buchanan’s progress through his treatment for T-cell lymphoma, particularly through his upcoming stem cell transplant—currently slated for January 2016. Wondering how we got here? Honestly, we kind of are too. This time last year we didn’t have any idea that our 2015 would be dominated by Brad’s diagnosis with and treatment for a lymphoma type so rare it doesn’t even really have its own name.

So here’s the story so far—the long version. (If you’re looking for a TL;dr version, check the About page, which also has some ways to help.) A little over a year ago Brad noticed some lumps under the skin along his jawline. He’d also lost a lot of weight (like, really a lot), but attributed that to exercise. He went in to see the doctor, who looked him over, saw a fit and healthy guy in his early 40s, and said, well, we’ll check out those weird lumps if you really want but we’d be very surprised if they were anything to worry about. Then he started noticing similar lumps on his abdomen.

A couple of biopsies and several other doctors saying they’d be very surprised if it were cancer later, well, everyone was very surprised: He was diagnosed with T-cell lymphoma in February 2015. A word about lymphoma: There are a lot of kinds. The two main types are Hodgkin and non-Hodgkin; Brad’s is non-Hodgkin (NHL, but definitely not the type of NHL that most amateur Canadian hockey players dreamed about as kids). Most NHLs are B-cells; a smaller proportion are T-cells, and then there are many subtypes of T-cell lymphomas. Brad’s is officially called peripheral T-cell lymphoma, NOS (not otherwise specified), though there has been some debate about its exact nature (it has a lot in common with the cutaneous lymphomas). As an aside: T-cell lymphomas are not as well understood as other NHLs, and are harder to treat and cure, in part because their rarity means there are few clinical trials or opportunites for double-blind studies. Anyway! If you are interested in more details about lymphomas you can read up on the various types here.

So, at the time of Brad’s diagnosis it was thought that his disease was indolent (slow-growing), and that it wasn’t particularly urgent to treat. We spent the spring waiting for insurance approval on one treatment option and seeking a second opinion because the type was so rare. Then in May the cancer surprised everyone again: It turned out Brad had a rapidly growing lung tumor (an expression of the lymphoma, not a separate lung cancer), which caused him a lot of trouble. He started chemotherapy right away; it worked so well the tumor shrank extremely fast; it left a hole in his lung, which then collapsed; and he spent nearly three weeks in the hospital at UC Davis Medical Center, which has a great cancer center and which we’re fortunate to live near. Happily, he recovered well from that and the summer was uneventful, with him doing chemotherapy (a regimen called EPOCH, which he tolerated well) every three weeks.

That chemo regimen ended in early September and Brad was in remission and preparing for an autologous stem cell transplant. There are two types of stem cell transplants, formerly known as bone marrow transplants, autologous and allogeneic. In both, the patient gets a super-blast of chemotherapy (and sometimes radiation) to kill off as much cancer as possible, which kills the patient’s immune system. The patient then gets stem cells (harvested from the bloodstream in a process called apheresis, which is similar to dialysis) that can rebuild the bone marrow and hence the immune system. (This used to be done with bone marrow, which was much more painful.)  In an autologous transplant, the patient’s own stem cells are used, which means there’s no risk of rejection; in the second type, an allogeneic stem cell transplant, donor cells are used, either from a sibling or a matched unrelated donor. (Those interested in more details about transplants—there is a lot to know and it is seriously amazing, almost magical science—can start here to learn more.) The allogeneic stem cell transplant typically has a longer recovery time, but in it the new immune system itself can fight the cancer.

The cancer, however, had another surprise in store. In early October Brad noticed that the lumps on his jawline and under the skin on his abdomen were back. A PET scan confirmed that the cancer had returned aggressively and he was started back on a new chemo regimen, called GVD, immediately. (Seriously: he was back in the hospital for more chemo two days after the PET.) And the plan changed: The relapse meant he was no longer eligible for an autologous transplant (which relies on super-chemo alone to cure the cancer) but needs an allogeneic transplant, using donor cells, and in which a new immune system may provide him with a cure. The best opportunity for a match is a sibling; sibling matches reduce the risk of severe GVHD (graft vs. host disease) post-transplant, which is a big risk of the procedure. We were extremely fortunate that Brad’s brother James is a match; there is a 1 in 4 chance of any given sibling being a match. If he hadn’t been, a match would have been sought for Brad on the international donor registry. (One great way to help people suffering from blood cancers is to get on the donor registry if you’re able and willing; here’s where to do that.)

Oh, and that brings us to a note about the blog title: We’ve learned, as you might imagine, a lot of new terms and ideas throughout all this. Most of them sound, frankly, like blah blah blah scienceytalk to our literary-leaning minds. But there’s one that delighted us both. The term for what Brad will be after his transplant is a chimera. No, not a mythological fire-breathing dragon-lion, and not an illusion, but instead a person with two genetically distinct types of cells. That is, the DNA in his blood will be different from his other DNA. (This could give him a golden opportunity to commit a crime; lucky for all of us, he’s a law-and-order-minded Canadian, but maybe I’ll get inspired to write a whodunnit turning on this.)

So where are we now? Brad is undergoing chemo and it’s going well, though he recently got pneumonia (an opportunistic infection when his immunity was low) and spent a few days in the hospital. He’s now at home, lying low and avoiding cold and flu season. (Hey everyone! Here’s a PSA for getting a flu shot and keeping all your vaccines up to date—not just for your own sake but also for all the immunocompromised people out there, like Brad.) That’s pretty much the plan until the transplant, which is now scheduled for January 11. He’ll go into the hospital January 3, for the prep regimen (which involves high doses of chemo and radiation), James will come out here and donate stem cells, and then Brad will have several weeks in the hospital waiting to become a chimera, via what is called engraftment—the growth of the new immune system—followed by a long recovery at home.

Our daughters are vastly relieved that Brad will be home for Christmas, and we’re vastly relieved and grateful that James is able to give us the best holiday present of all time, a new immune system that may cure Brad’s cancer. Watch this space for updates from both of us.