Climbing Mt. Everest

Sam continues to improve. He's eating really well again, his labs are in good shape, he seems to be coming off of the methadone fairly smoothly, and when he's awake he's alert, vocal, and active. In addition, this week's spinal tap showed no evidence of HLH in Sam's spinal fluid, so he can forego next week's tap and part of his chemotherapy. Today we played with a rattle, and I saw the first smile I've seen since before we came to the hospital more than three weeks ago. As near as I can tell, Sam is well on his way to being stable and strong enough for a bone marrow transplant (BMT). The hospital has started to look for a donor, and we hope to have an update in the next four to six weeks.

But on Wednesday we met with a doctor from the BMT team, and I couldn't help feel that the progress Sam has made over the last few weeks amounts to little more than getting to Everest base camp during a mandatory attempt on the mountain: necessary but not at all sufficient, and mostly insignificant relative to the long, punishing, and possibly fatal journey that awaits him.

The positive news is that Sam's ancestry puts him in a very good position for finding a bone marrow donor. The doctors don't give us odds or percentages, but they've all spoken confidently (and convincingly) about the likelihood that they'll find a strong match--i.e., a donor whose marrow profile matches up well with Sam's.

There are risks along the way, however.

In the days immediately preceding a transplant, Sam will undergo more (and, I think, more intense) chemotherapy in order to lay waste to his current, faulty immune system. This will put him at significant risk of infection, illness, fever--nothing good for a four-month-old with no natural defenses. The risk of infection will, I gather, remain high until the imported cells set up shop and begin building Sam his new immune system--a process that will take months.

Once he gets the transplant, Sam faces the risk of rejection in the form of Graft-Versus-Host Disease (GVHD), in which some of the transplanted cells attack rather than protect his body. This can be treated, but not always successfully, and not always without incurring damage to Sam's liver and kidneys. (The odds of getting GVHD are reduced by finding a good donor match.)

Sam will be in the hospital post-transplant for 4-6 weeks, after which he will be required to return to the BMT unit several times a week for testing. I'm not sure how long that process takes or how soon the follow-up visits begin to taper off, but it's certainly on the order of months. All told, it sounded like it would be a year before we'd really be able to see this in the rear-view mirror.

The pre-transplant chemo process will cause Sam to lose his hair (which seems relatively minor but which will probably hurt like hell for us), and he may ultimately face a whole host of side effects, some nastier than others.

So that's what's in store for Sam. We, in turn, have to look forward to days and weeks and months of the same stress--fear, anxiety, despair--that's already been the hallmark of this experience. To trying to "take it one day at at time," even if that's excruciatingly difficult to do without obsessing over every lab test, every procedure, every vital sign. To wondering if Sam is suffering, or will be. To not knowing, from one hour to the next, if he'll live through this. Or, for that matter, how we will.