Updated: Sep 24
Shawn was diagnosed with Optic Nerve Glioma at 6 months old. An optic nerve glioma (also called an optic pathway glioma) is a slow-growing brain tumor that arises in or around the optic nerve, which connects the eye to the brain. As the tumor progresses, it presses on the optic nerve, causing a child’s vision to worsen. Nearly 75 percent of optic nerve gliomas affect one or both eyes. (anafarberbostonchildrens.org/conditions/brain-tumor/optic-pathway-glioma) He was taken for his 4 month well child checkup and his mom had mentioned that he is not looking at objects and faces straight on, his eyes were wondering. He was immediately sent to Riley Children's Hospital and was told he may have Retinoblastoma and that he needed an MRI. Because it was the Friday before Christmas they had to wait until after the holiday for his first scan. On 12-28-18 they were told that it wasn't cancer, but the doctors weren't sure what the mass was. By the time Valentine's day came Shawn had a sedated eye exam and blood work done on the mystery mass; on 2-14-2019 we was brought to the oncology floor and spoke with whom would become Shawn's Neuro-Oncologist and received the news that Shawn had a Grade I Inoperable Brain Tumor and we needed to start chemotherapy immediately. His family was given 3 weeks to gather information, seek second opinion and to get a repeat scan before finding out that the tumor grew faster than expected during those 3 weeks. He needed to start treatment the following week. Shawn spent 13 months in treatment and has 5 different specialist, and 6 different therapists. He has been diagnosed with sensory processing disorder as a result of chemo, orthopedic leg braces, teeth erosion and food aversion as direct result from chemo. He has about 10% vision in his left eye and developing astigmatism in his right eye. The list of side effects is ongoing but he fights, daily! He fights what cancer stole and what chemo has stolen from him. He loves water and being outside and is enjoying life to the fullest... One day (soon) he'll ring the bell and go to Disney World to meet his best friend Woody and Buzz!!!