Amelia Nobis is 8 years old, and a third grader in upstate New York, who loves to read, play soccer, write, dance and sing. She also adores her little brother and sister. When Amelia was 4 years old, her mom, Chantelle, noticed what looked like a lazy eye. Feeling that something was off with her daughter, Chantelle insisted that Amelia have a CT scan at the ER. The image on the scan was horrifying. Amelia had a golf ball-sized tumor in the left ventricle of her brain. Amelia was rushed to a local children’s hospital for emergency brain surgery that evening. And the news just got worse: the tumor was a grade 3 meningioma — a rare and malignant tumor. Almost overnight, the entire family’s life turned upside down. Doctors quickly diagnosed Amelia with neurofibromatosis type 2 (NF2). Amelia had a full resection of that tumor in 2015, and that part of her brain has remained stable. In addition, Amelia also has a cataract in one eye, several spinal tumors (a larger c spine tumor) and cafe au lait marks.
Amelia has quarterly MRIs and is followed by a medical team that includes an oncologist, neurologist, audiologist and ophthalmologist and an NF specialist in Boston. Amelia is on “active surveillance.” The family also learned that Amelia’s dad, Pete, has NF2. Although his case (originally mis-diagnosed as Bell’s palsy) appears to be mild (Pete has vestibular shwanommas).
When Pete was 31 years old he went to the ER for what he thought was Bell’s palsy and after a second case of “Bell’s palsy” his doctor ordered an MRI that showed that he had vestibular schwannomas (a noncancerous tumor on the main nerve leading from the inner ear to the brain). Pete underwent Gamma Knife in 2009 and had to have steroid injections into his ear drums. Pete has slight muscle weakness on one side of his face, and a slight hearing deficit on the side with the larger tumor. Pete also has balance issues. Pete’s diagnosis of neurofibromatosis type 2 was later confirmed with genetic testing. Pete currently sees a neurologist and also travels to Boston to see a specialist.