My 11-year-old daughter, Amelia, loves school, reading, writing, soccer, basketball, and playing with her little sister, Hayden, and little brother, Blake. When Amelia was four, she ended up in the ER for what looked like a lazy eye. After a CT scan, they discovered a golf ball sized tumor in the left ventricle of her brain. She was rushed to a hospital and had brain surgery immediately following some additional tests. Her brain tumor had a full resection and she was given a small blood infusion during the procedure. Her brain tumor came back very rare – a Grade 3 (cancer) meningioma in the left ventricle. Upon further testing, her family also found out that she had several spinal tumors, including a c spine tumor – all being consistently monitored through MRI’s. Amelia also has a cataract in her right eye, and several café-au-lait spots on her body. She was diagnosed with Neurofibromatosis Type 2, and verified with genetic testing. Amelia has an oncologist, neurologist, ophthalmologist, audiologist and travels to Boston to see a neurofibromatosis specialist. Amelia has MRI’s every couple of months and has many medical phobias from everything she has been through (though she is one tough cookie, and so brave). Amelia underwent 3 major leg surgeries from May to August of 2020 for a rare leg tumor called a Perineurioma. Amelia has to go to Physical Therapy twice a week and is still trying to strengthen her nerves to give her a normal life style. Amelia was diagnosed with a high grade 2 Meningioma brain tumor in March of 2021 that was wrapped around a main vein in her brain. The neurologist was able to get 80% out, but had to live in Boston for 8 weeks (6 hours from home) to undergo Proton Beam Radiation (lost all of her hair at the top of her head). Amelia has several brain tumors that consistently grow on each MRI every three months. Amelia has just began the chemo drug Afinitor in hopes to halt the tumor growth (we will know in 6 months if the new medicine is working, and if it is not, will undergo yet another craniotomy).
My husband, Peter, works for 501/502 transport Fed Ex in Taberg, NY as a mechanic and tractor-trailer driver. 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 acoustic schwannomas (tumors on each side of his head on the nerve between his ear and brain). Pete underwent Gamma Knife in 2009 (for if these tumors’ hit his brain stem it could become fatal), and had to have steroid injections into his eardrums. Pete has slight muscle weakness on one side of his face. Pete goes for yearly MRI’s, and his tumors are being closely watched. His hearing has dramatically declined in the last three months, and there has seen growth in one of the vestibular schwannoma tumors he has.Pete is almost completely deaf in his left ear and partial hearing in the right making day to day communication with his family and friends very difficult. Pete is just beginning the process to begin the chemo drug Avastin in hopes to halt those tumors and regain some of his hearing back. Pete was diagnosed with Neurofibromatosis Type 2, and later confirmed with genetic testing. Pete, like his daughter Amelia, also has Neurofibromatosis Type 2. Pete sees a neurologist and travels to Boston to see a specialist. Pete is the first one and only one in his family to have Neurofibromatosis (spontaneous mutation).
How has NF affected our lives? You always want to keep your family safe and healthy. You hold your spouse and children very close and pray that nothing ever harms them. And then one day you wake up and find yourself in a hospital with scary words coming at you faster than you can grasp…brain tumors, spinal tumors, cancer, surgery, Neurofibromatosis…and the list goes on…and your whole world stops around you. We strive for a “normal life” day to day, and try to take our fears of NF and give them to God. But on our MRI days, our oncology days, our neurology days, our 6 hour trips to see an NF specialist day, our audiology days, and ophthalmology days…we are reminded, and the anxiety and fear of all that is NF is staring us in the face……….
With hopes for my daughter and husband’s improved health and well-being,