David, thank you so much for participating in this forum. My son Josef is 18. He had a low-grade tumor diagnosed in 2011 due to seizures, we did wait and watch till the summer of 2018 until the seizures got worse and we ran out of options. He had surgery that was meant to be epilepsy, his tumor location is complicated in the insula. we found a surgeon who specializes in that area. The surgery went very well, but seizures remained. The pathology came back great ganglioglioma grade 1 and we did not have a follow-up MRI till 7 months later as we were considering a second surgery. During the MRI they found a new tumor, this one high grade, he had emergency surgery a week later and it came back APXA. He did proton radiation together with Temodar, then 10 cycles of Temodar together with mekinist(trametinib). His tumor had EML4-BRAF fusion, CDK4/6 deletion and tert mutation. The first 2 were present in the first tumor. The fusion so far appears to be one of a kind. He did great till last week, when a 3 months MRI showed recurrence. 3 months ago everything looked great. We did stop Temodar 2 months ago, he was having low counts and had lost weight and the NO thought 10 cycles would be sufficient and he was on mekinist, which many doctors thought we should have done alone. I saw you mentioned your daughter was on Temodar, is this the first time she has been on it. Also do you think THC helps? I have been giving him CBD oil along with various supplements(curcumin, Boswellia, mushrooms, omega3, vitamind, melatonin ..) Added chia, hemp seeds, flax lots of healthy grains, does not seem to be making any difference. We are trying to figure out what to do now, the doctors do not sound too optimistic or have great options. We are trying to reach out to as many centers as we can. I wanted to see if you have any advice. I had asked if we can go back on Temodar and non of the docs so far think it is a good idea.