The results of last weeks MRI were not what we were hoping for.
After the team compared this MRI with one Kai had in December, they agreed the tumor is growing.
This tumor is expanding in the mid brain/ brain stem area, which coincides with his current symptoms of lack of head control, muscle tone change and pressure in the back of his head.
So we are back to pick your poison take two.
We have the same options as last time, plus three clinical trails. His doctors seem to be favoring the 5 drug oral chemo protocol that they recommended last time. I am still very nervous and overwhelmed by this option, but we are looking into it.
This week they decided to continue to give him the Avastin that he has been on. Two of the new protocol options would also include Avastin so they figured it wouldn’t hurt to keep him on it. We also decided to give him some steroids for a few days in hopes that the steroids will reduce any excess swelling and hopefully give him some relief.
I was apprehensive about starting the steroids this week as we are leaving for Camp Sunshine on sunday but we found out that Kai’s doctor is the staff doctor at camp while we are there so we decided to go for it. He assured me that whatever adjustments need to be made we can figure out up there. So we started the steroids, and now we are getting ready for camp.
Camp Sunshine is a camp for families fighting pediatric cancer. This week camp is specifically for families of children with low grade gliomas, like Kai’s. I am hoping to be able to talk to other families about their experiences with these protocols and decide what we should do next.
We are due back in the clinic the week after camp to start the new protocol so I will have to decide while we are away.
This is such an impossible decision for us to have to make…again