The second reaction is a much, much darker reaction than the first. The stopping of chemotherapy is a joyous event; as my wife put it, "It doesn't escape us that the reason for discontinuing treatment is that his kidney has been so damaged." Ultimately, if his kidneys were healthy, if they were able to stand up to the treatment, then we would be just finishing up carboplatin and starting the etoposide. He's likely looking at a lifetime of dietary restrictions, kidney care, and excessive medications.
Side note: at St. Barnabas, they had no intentions of reducing dosages or discontinuing treatment while The Boy was still breathing. Scary, no?
So, what are the real difficult parts?
- cancer recurrence. Now that he's no longer receiving chemo, if any cancer is left in his body, it'll grow back. Now that he's not seeing doctors once a week, will things start to change?
- cancer spread.
- chemotherapy-induced leukemia. A possible / probable side effect of the carboplatin in particular.
- kidney failure, dialysis, and transplant.
- continued hearing loss.
- Continued motor delay.
- Growth side effects due to the radiation and to the chemotherapy.
- Continued treatment of Wilms Tumor side effects.
- possible Red Sox fandom. (This one's a joke.)
Okay, so he's not getting chemo. That's great. Here's some of the other stuff with which we're dealing. As my wife put it, also, if we're not reacting enthusiastically, it's because we're not out of the woods yet. We're not particularly close to being out of the woods, but at least we're closer than we were earlier.