With each of my pregnancies I remember being most nervous from about 24 to 28 weeks. After the brief period of time I spent as a medical student in the NICU, those earliest of premies haunted me. Before 24 weeks you lost the baby. Devastating, but the decision has been made. The more time that goes by, the better the baby's outcomes. But there is that ugly gray zone, full of decisions that parents shouldn't have to make. Do you keep trying, hoping, pushing? Or do you let go?
I avoided the premie decision, but I am faced with my own decision that parents shouldn't have to make. Henry has done fabulously well with chemo, and his tumor has responded. But his tumor and cell type is very aggressive, and likely to return, at which point palliation is our only option. So now we face radiation.
Radiation does not share the sandbox well with little brains. For a three year old, full dose radiation leads to "neurologic devastation" in the words of our radiation oncologist. When they play with decreasing the doses, cancers recur more often.
So we're faced with any ugly decision. How much to use? Do we use any? We could do nothing, and hope for the best, with the thought that a victory would be a full one, and Henry's cognition intact. Or we could choose to give some lesser amount, and know that we are forcing upon him cognitive and behavioral challenges that we cannot predict, without any guarantee that we are improving his chances of survivial.
This is about where my brain enters a tailspin. How much is too much? How much is enough? If he was born a 'special needs' child, I wouldn't love him any less, so why does it pain me to think about him that way? What are my goals for him? What would his goals for himself be? What is the nature of self, and are we altering what makes Henry Henry?
What bothers me most is my wide vacillations in how I feel about the radiation. One hour I don't want it at all, que sera sera. The next I feel the opposite.
This is the first real treatment decision that we've had to make for Henry. It's a heavy one.