We did get Scott back home yesterday afternoon. But he is a very, very tired little guy. All three of his steroid doses were pushed in prior to him leaving yesterday, which finishes up this cycle. He's not very well right now, as he's fighting the effects of everything, as well as fatigue. He is just fed up with most all aspects of this "treatment" now. He's up to a total of 31 restless, aggravating nights in the hospital. Stephanie is also fighting the same ordeal. She didn't manage much sleep at all during this stay, even without it being as long as the last, it really took a toll on both of them. It takes its toll on us all continually.
I was staring at a calendar this morning, and realized today marks 90 days since that evening when Scott got sick after dinner. Sadly, none of us will ever forget January 24. In some ways, it seems like years since that day. Then, at other times, it seems 3 months have just blurred together in an endless stream of tests, worries, hospital stays, clinic visits and nausea for Scott. He's hardly had anything that could be considered a "break" from being loaded up with some sort of medicine. 90 days, 31 in the hospital.
Our hope now is to keep him out of there with any complications. The doctors did tell us only a small number of kids dealing with this protocol actually have all 4 of their high-dose treatments on schedule, which is what Scott has managed. We have to keep diligent with cleaning hands and surfaces around the house. Derry, Steph and I have to keep clear of him at the slightest hint that we may be catching a bug, as any bug runs the risk of having an unplanned hospital stay. I have one now, and it is scary thinking a bug which just makes me feel bad can send him to the hospital.
Scott doesn't want to spend anymore nights in that place. No one can blame him at all. It all adds up to a massive amount of stress for him - an amount of stress no 10-year-old should carry. It robs him of simply being a "kid".
Just a couple of days downtime, then back to clinic Thursday for bloodwork and leg shots (8 of 20).
Scott & Sunny
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