Anytime I have a big decision to make, I resort to the side by side pro/con list. This will be a work in progress, leading up to the decision, but I bet it is almost the final product. Although I need more information, I really feel like banking on the 2nd time being a charm with surgery alone. I think Andy is coming out the other way since he sees the major side effects as being unlikely to occur and wants to feel we did all we could do.
Pros
1. Increase change of a cure by X%. We don’t know what the percentage is yet. We do know that if we had done proton radiation after the first surgery (which no one even recommended), it would have increased the cure rate from 86% (surgery alone) to 95% (surgery and radiation). In other words, a 9% increase in the cure rate. I don’t know why 9% would not apply here, but a radiologist suggested this increase in cure rate is simply unknown in this situation.
2.  We would feel like we did all we could do to get a cure for little Jude.
Cons
1. Radiation is not a guaranteed cure.
2. We were told that brain radiation is a one shot deal. If it doesn’t work, they don’t like to radiate the same area again because of the side effects.
3. I would have even more things to worry about. If we do surgery alone, I just will have to worry about the cancer coming back and it spreading to the spinal fluid and killing him (which was a risk for the past year and a half since the first surgery and I didn’t even know about it so it must not be too likely to happen or someone would have told me about it). If we do radiation, I will still have to worry about the cancer coming back and it spreading to the spinal fluid and killing him, and I will also have to worry about the all the side effects of the radiation.
4. Risk of stroke due to vascular changes is 1% and this would be a risk Jude would have to worry about the rest of his life.
5. Risk of secondary brain tumors from the radiation is 1%.
6. Left ear hearing loss (to some degree) likely.
7. Impact on fine and gross motor skills. The radiologist said, “He may not be the best athlete or the most coordinated person.”
8. More seizures triggered by the radiation.
9. Permanent hair loss at the radiation site – 5% chance.