My son was diagnosed in June with a Pontine Glioma high grade in Lubbock TX and they said that they didn't have a treatment for this tumor and that my son had maybe 1 yr. to live. They sent us to Houston to Texas Children's Hospital where he did 6 weeks of radiation and participated in a study using a pill form of chemo that was being researched. He didn't do well on this drug so he was taken off. His MRI after radiation showed 34% shrinkage but his MRI 8 weeks later showed no more shrinkage but the good thing it hadn't grown anymore. They told us they didn't have another treatment plan and sent us home...to wait. Wait for what? Our baby to get worse and possibly die? My son is only 8 years old. I just couldn't except that. I spent every possible second on the internet doing research and found a Brain Tumor Center in Durham, NC that is treating another boy with the same tumor as my son. Needless to say we are headed to NC this weekend for a consultation with this doctor to talk about treatment options. He agreed with us that we shouldn't sit around and wait and do nothing. In my opinion, time is of the essence. There has to be other options for you. What I am saying is don't just take one doctor's word for it. SHOP AROUND!! If there aren't any other options at least you'll know you tried your hardest.
I will keep you and your family in my prayers...I also believe in the power of prayer. NEVER GIVE UP!!!