Tomorrow begins a long and dangerous road, one we’re lucky to be able to walk at all.
We’re back in Philadelphia to start almost seven weeks of proton radiation therapy, which will attempt to burn away the cancerous cells in Rebecca’s head without burning too much of the brain matter that surrounds them. That’s the danger: the brain matter in question is the brainstem, thalamus, and fornix. These are all, in the words of several of the specialists who’ve talked with us, high-value real estate. Too much damage there could cause serious side effects. And my use of the word “serious” in that sentence may constitute one of the greatest understatements of my life.
This is why we are undergoing proton therapy as opposed to any other form of radiation therapy: we are told that proton therapy is “more brain-sparing” than its irradiating cousins. In other words, it’s the technique that gives us the most cancer-burning for the least brain-burning. Or so we are told.
In all likelihood, “least” does not mean “none”. Thus the concern about possible side effects; that is to say, neurological damage, which (if it occurs) may or may not be significant, and may or may not be permanent. There is no way to know until it happens, or possibly doesn’t happen.
These are the dice we are forced to roll. We must bet our daughter’s cognitive abilities against her continued survival, her mind against her life, and hope against desperate hope that none of the die lands with a skull face-up.
As I say, we’re lucky to have the opportunity to possibly inflict brain damage on our child, because having that opportunity means the cancer is weak enough that there is a decent chance of eliminating it completely. If the doctors can do that, she can actually grow up and learn to cope with whatever side effects there might be, or maybe even have her growing brain interpret the damage as deficit and route around it. She will be able to become whoever she will, and if that isn’t who she would have been without the cancer and radiation, well, that’s unescapable now. Even if there are no physiological side effects at all, she will still never be who she would have been. This whole experience will profoundly shape her, and the rest of us as well.
All of which is really unremarkable, in its way. We all extinguish an uncountable number of possible future selves every day of our lives, and never mourn.
As I type this, Rebecca is unwinding from the long drive here with a favorite video. Part of me wants to go over there, stop the video, and spend all night holding and talking with her. But she is a spirited, defiant five, and would probably end up throwing a (deserved) tantrum at me for messing with her and boring her to tears and possibly scaring her a little. Because she is already far too painfully aware of her own mortality, in a way that no child should ever have to experience. I have no right, and less desire, to force that awareness even further into her life.
We don’t know what lies at the other end of this stretch of the road, but must walk it anyway, because we know beyond doubt what lies at the other end of the other road, the one our hearts want us to take, the one that leads away from proton beams and chemical cocktails and pain and fear and so many unknowns, but also away from the possibility of a full life.
I hope she can one day forgive us our choices. I hope we can one day do the same.