I feel so out of the loop. Although we have decided to not treat
with Chemo anymore, I still have so many questions. In a post
someone said, "I think we are all on the same protocol." However, I
feel like my son's treatment plan was going to be different than the
other ones I have read about here. Also, is there anyone out there
with a Rhabdoid tumor being treated that is as young as my son
Carter? (4 months or less) Are you all receiving treatment at the
same facility? Are your child's rhabdoid tumors on the brainstem?
Has anyone been treated successfully without radiation? Do your
children have any of the same issues as mine- hydrocephalus with vp
shunt, tracheostomy, g tube. I just feel like I am not connected to
others with ATRT or the research because of all the other problems
my son has had. Any input would be appreciated.
Anastasia