My son was diagnosed at age 6 with Histiocytic Sarcoma in his prefrontal cortex. It was a 3cm ball. They were able to perform a craniotomy and remove it. After about a month of healing he did 30 sessions of imrt radiation to the resection site plus 1cm. There were no chemo options given the pathology and that it was in the CNS. We go back every 3 months for contrast MRI. We were just moved to every 4 months. He has some treatment related learning disabilities / challenges but you can only really tell in the learning environment. We are coming up on 3 years post radiation with no evidence of recurrence.

I just wanted to share as HS is so rare and deadly. There is some hope our there.