Clayton is doing really good right now. He and I were sick last week, but aside from that, he is doing great! He has been doing his schools a half a day. I am hoping that he will really pick up some things from the kids at his regular school. I say regular school because he spends three mornings a week at a school for children with delays and the other two mornings at a regular school. I love that he gets to have both. School and childcare have been a problem for us because as he gets older, his delays become more obvious and aren't always shall we say "welcomed" at some childcare facilities. I even had one place tell me their insurance did not allow them to keep a child with mental or physical disabilities. That came as a shock to me. It was the first time I had really heard someone label Clayton in that way. So I am glad he is able to go to the schools he does in the mornings when he is not in treatment...or sick. George and I have felt like we may end up having to home school Clayton though for multiple reasons...which of course also factored into my recent career decision. So much for grad school. As a mom my dreams and goals have had to change. My life has to work around Clayton's and even though it can be hard and even hurtful, I wouldn't change it. It's all leading me somewhere...hopefully not off a cliff!
We have also tested him for treatment three times over the past month and a half and he continues to be HAMA positive, which means no treatment. His HAMA did appear to go down a little though, which could be a sign of treatment being closer. We test him again on the 25th. Otherwise, we are set to go to NYC for scans on the 30th. The scary thing is that those would be our last scans before starting Clayton's traction June 11th, which would mean he would be due for scans again the week of August 1...during which time we might still be in traction and unable to do scans until after August 27th. As far as the world of cancer goes, being NED still at this point and not being able to do scans on time is one of the scariest things EVER. Seriously, when I say that this cancer is aggressive, that is probably an understatement. Our little buddy Abigail was in remission for a year before relapsing at Christmas. They started a chemotherapy regimen, but in February found that the tumor had not only not shrunk, but it had increased a little in size. Thankfully their most recent scans this month showed no more increase in size. Then there is Justin. My sweet Justin. Love this kid. He was the one on StandUp2Cancer. They had a room at the Ronald beside ours when we first went to NYC. Anyway, he relapsed for the sixth time recently. Yes, the sixth time in almost seven years. The problem at this point is that his body is so weak after seven years of treatment, that their options are limited. Unfortunately, the cancer is showing a lot of progression in a short amount of time. So, its obvious why we can't let our guard down and why we are going to be scared out of our minds while our priority is his back for a few months. It's so screwed up because if he does relapse he will be better off if we have his back taken care of. I dread explaining to technicians what type of rod he has in his back though when the day comes. It's never fun explaining ALL of his things. And you can bet I always have to repeat stuff over and over....and over. Thankfully MSKCC is pretty good with their electronic records and that helps.
Please pray for Justin and Abigail.
No comments:
Post a Comment