We have all been pretty busy for the last month. Brody has been feeling well about 99% of the time. He will occasionally have belly or back pain but seems to be fully recovered from his surgery. He still has an internal stint between his right kidney and his bladder. He has not had a CT since the middle of March and the plan is to have another CT in a few weeks to see where we are at and if the tumor looks like it has been kept in check then the stint will be removed-- the stint still bugs him at times (occasional pain) but not too often.... the purpose of this is if the tumor starts to grow again that it will maintain a channel for his urine to drain to his bladder so he doesn't have to get a nephrostemy tube again.... Nephrostomy tubes are NOT fun.
We managed to work in a trip to Disney World and Lego Land a few weeks ago-- we left after Brody's week 3 Chemo (week 4 is a lab week)-- and Brody's Oncologist was ok with us skipping labs on his off week as he hasn't really had any issues. We had a Childrens hospital line up down there to take him to if he had any issues. The boys had a blast however the weather didn't co-operate too well had a fair amount of rain on our park days. Brody's favorite ride was and still is Splash Mountain-- We literally went on this ride over 20 times although he did try and like Space Mountain as well... we did each of the parks and Brody was tall enough to ride every ride except the Aerosmith Rollercoaster at "Hollywood" studios. Brody's Oncologist wrote us a letter that allowed us to get a guest assistance pass for all the parks which allowed Brody to utilize the fast pass lines for nearly every ride-- this is good since Brody can get tired pretty easily-- however for the most part, the lines were not too bad anyway-- most of the popular rides had about 20 minute lines or less. We went to Lego Land one day too but this was somewhat of a disappointment after going to the Disney Parks. We stayed at a very nice Marriot Resort that had really good prices (perhaps it was a slow time). We had nice weather on our last 2 "beach days". We drove down there and back over 2 days each direction-- both ways we stopped near Chattanooga Tennessee to see Trish's sister Julie and her family.
While on the trip we talked to the Jaden and Brody and they both decided they want to go back to public school for the rest of the school year (we only have 3 weeks left). Trish got the ball rolling and they boys both started back up this past Wednesday-- we were able to work out a few things with Brody's Principal & Teacher to keep him hydrated and avoid germs (ie hand sanitizer on Brody's desk, allow Brody to have a drink at his desk, etc)-- we also wanted to have Brody evaluated and get and IEP (individual education plan) since he is a little bit behind in some of his skills.... His reading has come along way the last few months but we think he might be somewhat behind in other subjects and want to work with him over the summer.
We are considering enrolling the boys in the fall but we are obviously concerned about being able to keep the boys healthy and Brody on his chemo regimen (if he gets too sick he has stop chemo). His labs/counts have been very good the last few months-- we will see how things go.
I think thats about it- obviously more later.
