Stephanie is dead-on about this being a living hell. There is nothing outside of losing a child which I can think would be a worse situation to have with a little kid. It's breaks your heart on an hourly basis - if it doesn't do it more often.
It will make you angry very often. It will make you sad even more often.
Any parent in the world just wants good things for their child. This disease makes you realize that with all of the "normal" challenges with kids, they hardly register as anything remotely considered to be "challenging" now. Yes, perspective changes drastically. We are planning to take in a movie at the theater this weekend if Scott's feels good. Something as minor as that now is a HUGE thing to simply be able to do and not be a large risk to him.
We don't drag Scott around in public when his counts are down. Even if it is a wonderful charity event or some type of event done for cancer kids. It is very simple - counts low? We don't go. On our visit to the hospital this week, Doc Rossbach commented he was concerned when he got called by us. His concern came from the fact Scott hasn't had even one fever since diagnosis. Stephanie gets good-humored ribbing from the clinic folks about us keeping Scott sort of like "The Boy in the Bubble".
But it is simple. The oncologist told us from the first day fevers and infections were the complications that need to be avoided at all cost. So if his counts are down, we don't expose him to anything. Even some of the other cancer kids parents tend to think we keep him "too contained" - but I don't believe any of them have a kid that's not contacted a bug or had a fever since diagnosis.
So a movie nowadays is a big time out. And it likely will be for quite some time. But that is okay, as it is what is best for Scott.
Nothing else matters now. Nothing else is remotely close to being on the "important" list aside from caring for Scott and Derry.