Falyn is your typical 8-year-old girl. She’s a third-grade student in Forsyth County. She’s into music (her favorite singer is Lauren Daigle), technology, science, and participated in the cheer club at school. She loves to get her nails done and enjoys playing with American Girl dolls. She has two younger sisters with whom she loves and fights with at the same time. She wants to be a nurse when she grows up. This desire surfaced when she became diagnosed with a rare diffuse leptomeningeal glioneuronal tumor located on her spine and brain stem.

In December of 2018, Falyn began complaining of headaches at school. I had taken her to the doctor thinking she was developing migraines. She began laying around a lot and closing one eye when talking to us, saying that she was seeing “duplicates.” She just wasn’t herself. After a couple of visits to her regular pediatrician, we were told to make an eye appointment, and we were also referred to a neurologist.

The eye appointment came first. I knew as soon as the eye doctor looked into her eyes that something was wrong. The doctor kept checking over and over and finally asked me to step outside. She said that both of her optic nerves were swollen, and we needed to go to the ER at CHOA immediately. There, they did a CT scan and found excess fluid on her brain, which was causing pressure, which was causing the headaches. We were admitted to CHOA that night.

The next morning, Falyn was sedated for an MRI which confirmed that she had the excess fluid, but also revealed some abnormalities on her spine. She had an emergency shunt placed that morning, as well, to relieve the fluid on her brain. Two days later, Falyn had a laminectomy to biopsy the abnormalities on her spine. This was just the beginning. Although Falyn’s tumor is not considered to be cancer, it is still treated with chemotherapy. Falyn had to have another surgery to have a port placed to receive her chemo. She had 43 treatments over the course of a year. Roughly once a week, only missing when her counts were too low.

There aren’t too many people I know who could have done what Falyn did for an entire year: weekly pokes, weekly chemo, MRIs every 3 months, continue going to school, daily supplements, hospital stays and visits because of fevers, losing her hair, etc. I think a lot of her willpower to get through it all had a lot to do with the relationships she built with the angels who work at CHOA. Falyn is very intuitive and inquisitive. She wants to know everything about anything. The nurses and doctors at CHOA provided her with every ounce of information that she requested. They allowed her and encouraged her to be a part of everything they did to treat her. They loved on her like she was the only child there. She wants to be a hero when she grows up. Just. Like. Them.

Right now, Falyn’s tumors are stable and not growing. She will have regularly scheduled MRIs every three months, to which she doesn’t mind going because she wants to see her nurse and doctor friends! We will also check in regularly to have her port flushed until it is surgically removed. We thank our Heavenly Father for getting us through this trying year and placing these exceptional people in our lives to care for our oldest daughter. The bad has made the good that much sweeter.