My son, Hoyt Lee, is 20 months old now and was diagnosed with NF1 at 3 months. On 2/14/12 they found an optic nerve glioma and he has been undergoing chemo since 2/21/12. They just did an MRI last week and the tumor has grown, it is a large one, and not responding to treatment.
I am asking for help on any information on where would be the best place to take him. I am looking for a Childrens neurofibroma clinic. I live in southern Kansas, but willing to go anywhere that I need to in order to save my sons eyesight!