Grade 3 PXA brain tumor

kieragregory

My step son (14) was diagnosed (6/2025) with a rare malignant PXA grade 3 brain tumor (with BRAF600E mutation)
Initial resection went well, surgeon was confident he got most if not all of tumor. We followed this by 6 weeks of radiation, little amount of symptoms but not too terrible. A month later MRI came back with some unusual tissue which surgeon wanted to get out, unsure if it was tumor or scar tissue. Surgery went well! pathology came back as more tumor unfortunately (and surgeon was confident again about complete resection after second surgery— and post surgery his MRI clean)

His neuro oncologist wants to move forward with (only) one more radiation treatment, two non chemo medicines to target the BRAF mutation (I can’t remember the names right now) followed by oral chemo for the next 1-2 years.

He is a strong and otherwise healthy 14 year old boy with zero health concerns apart from this.

Before his diagnosis, he was a very healthy normal teenage boy— did jujitsu, sports, tall & lean, ate well (we are not big processed foods/fast foods people) just the one seizure leading up to finding the tumor.

My question to anyone out there is:
Has anyone with this type of brain tumor gone the watch and wait route?
Has anyone dealt with this before with similar outcomes? Or had different outcomes?

Has anyone refused the chemo treatment and gone a more holistic way? Worked with any functional medical doctors?
He has been clean he does not want to pump his body full of chemo chemicals and medicine for years and so we want to exhaust any and all other avenues before we start or need medication (esp because his current MRI is clean)

I would LOVE to talk to or hear any and all situations, comments, thoughts or instances out there.

Thank you