This NIH neurosurgical clinic was supposed to be easy, and it was. We felt so confidant that all reports would be stable, and they were, that we weren't expecting any shocking news.
But then Dr. S, while discussing the successful removal of the cerebellum tumor and the stable condition of the other tumors, let slip a little phrase that gave us cause for concern.
"...and the brainstem tumor allows you to stay in the study..."
And that little phrase provided the fodder for our lunch-time conversation.
"What happens if the brainstem tumor needs to be removed?"
"If it needs to be removed, then it has to be removed."
"But then I won't be able come here anymore."
"Steven, I don't think you'll be removed from the study if that tumor needs to be removed."
"I think you meet certain demographics that are needed for this study."
"Yeah, because there aren't many teenage boys with central nervous system VHL tumors who meet all of the other criteria of the study, and the drs. need to look at a large variety of people when doing these studies."
"So I'll be in this study forever?"
"Well, yeah...except that the study is only for five years, I think. That means that you have about three more years of being seen here."
"So what do I do after that? Do they just put me into another study?"
"I don't think so, but since you're here, maybe they could help you find another study. You know, there are usually some studies going on here that try to treat these tumors with drugs..."
"Would that be a good idea, with the side-effects?"
"Well, you'd have to choose if you want to risk the side effects or not..."
"Kind of like deciding if I want to feel worse before I feel better?"
"Kind of like that..."
"Except that I'd only feel better if the drugs work."
"And if its a study, they might not work."
"So I could have really bad side effects and still have the tumors."
"But I wouldn't really have much choice, would I?"
"Because I'd have to give it a try, since this is the place where a cure will be discovered."
That statement was followed by a long pause, as I tried to stop that lump that forms in my throat when my son starts talking about things that should never have entered his world.
"I don't have much choice Mom. I need to find a cure."