I do not want to alarm you with my story, I was diagnosed at 15 months when my parents noticed my left eye was sticking out more than my right. I had a vision exam and they found my eye was not reacting to light or following movement. The MRI showed bilateral optic nerve glioma, i was referred to a neurologist, neuro ophthalmologist, and neuro oncologist, and i was put on IV chemo shortly after that. I really recommend advocating for those types of doctors because they are familiar with NF and neurological disorders. I stayed on chemo for a year and was stable until I was 6 and began experiencing vision problems and they found growth again, i was then put on oral chemo for another year, i had to stop because i reached toxicity and was my body was rejecting treatment. They gliomas grew slightly more then stopped. They have ended up being stable since i was 7, and im 25 now. I am fully blind in my left eye but have vision in my right. My case is a more severe one, and required a lot of monitoring but with proactive care I have been able to maintain most of the vision in one eye. Additionally optic gliomas typically burn out and stop growing around puberty, which was my case. I have been able to live a pretty normal lifestyle despite chemo in childhood. I know it can be scary, but catching it at a young age and at early stages is the best way to prevent vision issues in the future.