Neurofibromatosis Research.com

On wed of this week we were told our 2 yr old son has NF-1, he has a tumor on his spinal cord and brain stem and both parts are swollen The neurosurgeon says there is nothing to do surgically because of its location. I told my doctors a year ago about the 15 cafe au lait spots and no one listened and know he has scoliosis and a head tilt and is slightly unsteady. I am terrified and feel very lost, if someone is out there with some advice or hope for our family please write. We have got a great team at Miami childrens hosp but it seems the name of the game is waiting. Thanks for listening, Mindy Brain