hi @holly56 and welcome to Connect. It is such a challenge to find others with rare tumors, such as embryonal tumors.
I'd like to introduce you to @aworriedmom@dgruk@lmp1 and @csaylor who is are parents of adult children living with brain tumors. They know first-hand what it is like to watch a loved one and the family go through such a difficult time.
Holly, did your son live with you at the time of diagnosis? Does he live with or near you now?