This morning Lucy asked me when Daddy is coming home. I don’t know, I had to answer. I had her count up the days Brad has been in the hospital, on the calendar we have been Xing off. Per our six-year-old, this is Brad’s seventeenth day in the hospital. He’s therefore shortly to exceed his previous record for length of hospitalization (nineteen days), set back in May. That’s the kind of personal best nobody wants, but such is life with cancer.
I told Lucy that seventeen days is most likely about halfway through Brad’s hospital stay this time around. Her next question was: why does he feel worse now, even though he got the stem cells last week? It’s a good question, and I tried to explain in kid terms to her why he feels crappy now, and why his recovery will be slow and will contain quite a few ups and downs. Coincidentally, just yesterday Brad suggested that we post an overview of his medical status today; he’s been keeping everyone updated on the day-by-day, but we thought a big-picture look at where we are and what we can expect going forward could be helpful. So here, not quite in the terms I used to explain to Lucy, is that look.
Right now he is at an absolute nadir in terms of his white blood count, and he say he feels like it must be a nadir in how he feels as well, that he can’t possibly feel worse than the mixture of fatigue and discomfort that he’s felt all day today. (Hence my writing today’s post.) That’s unfotunately as expected—the myeloablative preparatory regimen of intensive chemo and radiation that his oncologist selected was intended to wipe out everything in his bone marrow, plus all his cancer, plus, unfortunately, a lot of other stuff besides—like his hair, any coating on his mucous membranes, and all his energy. While these side effects are miserable, they are medically expected and also reasonably well managed by the nursing staff and doctors.
In a few days’ time his white blood counts (recorded on a special calendar the nurses posted in his room) should start to creep up, though we don’t know exactly when. The climb in his WBC numbers will mean that the stem cells he received in the transplant on Day 0 are starting to engraft, or repopulate his bone marrow. In other words, they’ll move in and start growing him a new immune system. Brad’s transplant nurse said that engraftment can start happening as early as Day +12, though a little later is more typical.
Once engraftment is taking place, the side effects from the preparatory regimen should start to fade—but new side effects in the form of graft vs. host disease (GVHD) will likely start to pop up. We can’t know what these will be, but they stem from the new immune system failing to recognize the host (Brad) as its new home, and treating it like a disease instead. Often, they look like a localized allergic reaction, and they are typically controlled with steroids. Because GVHD can flare up in unexpected ways and places any time, it’s likely that Brad’s trajectory of recovery will look less like a continual upward slope and more like building waves, with plenty of peaks and valleys.
For the long term, the medical team also keeps GVHD under control with immune suppressant medications, which Brad will be on for several months to come. This keeps the new immune system in check so it doesn’t attack the host, but also lets it settle in and start to function. Brad’s oncologist, however, is hoping to see a little GVHD; that indicates that the immune system is on the ball, functioning well, and ready to attack the cancer that it must fight in future.
So, all this is a delicate medical balancing act, a micro-drama taking place on a cellular level. But from the outside, it just looks like a lot of waiting—and will for a long time. That’s hard not only for six-year-olds, but for this particular grown-up as well.