June 11, 2012

And then there were two... As I mentioned before, we scratched our previous plan of starting 3f8 today. The neuroblastoma team needs for them to sort through his kidney issue before starting. That means that Dr. La Quaglia needs to remove the nephrostomy tube and put in a stint. Dr. Laquaglia doesn't get back in town until the 15th, so he can't do it sooner than the 18th and even if it somehow could happen, the neuroblastoma team will all be gone to a neuroblastoma research convention that meets once every three years so there is no way we could ever start our 3f8 the week of the 18th. Which means the soonest that we could start 3f8 would be the 25th. We were going to look into doing the radiation before the 3f8 so that we could come home sooner, but they need a week and a half to plan, so the soonest we could do that would also be the 25th. In a nut shell, we are now starting the 3f8 on the 25th and the radiation on the 2nd. So we will be here until at least July 10th.
Which bring us to the, "and then there were two." George and I couldn't stand the idea of us both missing that much work, so he flew back home today and me and Clayton will be wingin' it here just the two of us. George will be back though for the 3f8 and the radiation; we decided a while back, that those were the most important things for him to be here for. We'll be OK though in the mean time. This week we have tests and stuff to get ready for radiation and the next week we will be tackling the nephrostomy tube, so we'll keep busy.

I've got Clayton set up with a little play area in our Ronald McDonald room and of course he has the awesome play room downstairs to keep him busy. We have to keep working on building his strength back up whenever we have down time too. He doesn't have to learn how to walk again mentally, just physically, but it is definitely like he is starting back at the beginning.
Anyway, looks like we will be spending the 4th of July and my birthday here...here's to new experiences!