I've been avoiding posting, because once again I'm not sure what to tell anyone about the plan. Friday we went back to the hospital to check in with the surgical team to be sure they were still comfortable with Clayton's progress. We had the added surprise of seeing Dr. La Quaglia on his first day back in town. For now, everything is fine, nothing has gotten worse, so we just have to wait for it to get better (talking about the bleeding from his bladder). From there, the plan is to remove the nephrostomy tube this week and place a stint in is ureter. Hopefully we'll find out when today. Then about 4 pm on Friday, I got a call from the neuroblastoma team letting me know that the 3f8 has been pushed back to July 2nd because they want to be sure his kidney is stable before starting the treatment. I don't even know where to start. On the one hand I am happy that they are working so hard to protect his kidney, but on the other hand I hate the idea of prolonging the 3f8 and the antibody treatment because I don't want the cancer to stand any chance of regenerating in the absence of some kind of maintenance treatment. Then, I remind myself that these doctors are the experts in neuroblastoma and live for this disease and their ultimate goal is to keep Clayton cancer free, so they are not going to prolong anything if they are concerned about the presence of cancer activity. That said, right now 3f8 and radiation won't be until the first two weeks in July. So this week we have to take care of the nephrostomy tube and that would hopefully leave us with a free week next week. If that happens then we will come home maybe from a Saturday to Saturday or something- that would be the week of the 25th. Right now we just don't know.
What I do know is that Friday was a huge turning point for Clayton. Friday marked just over a week that we have been outpatient and he had been slowly starting to walk again in that time. Friday though his legs, his personality, old habits, it all just came rushing back. I went almost two months without seeing my child walk, so that was pretty crazy to really see him get his groove back. It's sad how easy it is to forget certain things. We had a good weekend though. We went for walks in the park Friday and Saturday and had a nice quiet day on Sunday. Now we just wait to see what the plan is...
The first week, he kept retreating into his "man cave", but now he's coming out of his shell.
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