Teenage boy with a meningioma?

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January 11, 2016 - Baltimore, Maryland

In July 2015, we were surprised to find out that at a routine pediatric ophthalmologist follow up appointment, my 14 year old son had lost significant vision in his right eye when compared to the year before. Initially, I thought he would just need glasses but his vision could not be corrected via conventional means. Our wonderful pediatric ophthalmologist referred us to a neuro ophthalmologist who ordered an emergency MRI because he suspected brain cancer. While we did not receive the brain cancer diagnosis, we learned a new word that day - meningioma. In a daze, we met with a neurosurgeon the next morning to discuss brain surgery for our teenage son, who was a few weeks away from starting high school. That neurosurgeon did not leave us with the warm fuzzy feelings so we requested a second opinion at Johns Hopkins Hospital. After meeting with a pediatric neurosurgeon there, as well as a few testing/diagnostic sessions with their neuro ophthalmologist and several presentations before their tumor board, it was decided that surgery would run too high a risk of causing further damage to my son's vision. We then met with their radio oncologist who requested that we consult with UPenn/CHOP to discuss pencil beam proton radiation. We initially hesitated because it was now October and school had started. How were we supposed to pull a 9th grader out of school for 6 weeks in order to travel to Philadelphia for treatment? After several emails with the school system and guidance counselor, who advised that our county offered a temporary home schooling option online, we agreed to the consult with UPenn to discuss proton radiation. It was the best decision we could have made for our child! He began proton radiation treatments Monday thru Friday two weeks later and we began 6 weeks of living in Philly during the week and coming home on the weekends. My son received treatments in the mornings at UPenn and then was instructed online for his high school classes in the afternoons. It was a long six weeks but we are so lucky that he had no side effects and no major defects as a result of treatment. The verdict is still out on whether the tumor has stopped growing or is maybe shrinking. We also will not know how his vision will be in the future in his right eye. He does have some vision loss in that eye as well as a partial field of vision loss in that eye; however, we hold out hope that some of that lost vision may return in 6 -18 months because of his young age and early diagnosis. We are extremely thankful to our pediatric ophthalmologist for his quick referral to the neuro ophthalmologist and for the teams at Johns Hopkins and UPenn/CHOP for their expert care of my son. We would recommend Proton Radiation Therapy a million times over for anyone who is on the fence in how to treat optic nerve sheath meningiomas!