NORMAN, Okla. - Like many eight year olds, Shylah Still loves spending a hot summer afternoon in a cold pool . She adjusts her goggles to swim under water.
This Norman girl’s vision of the world, above and below the water is under threat and has been since her birth.
Shylah’s mother, Katherine, remembers getting the diagnosis “I was devastated and my husband, Corey, found me over her crib crying.”
Shylah had light colored birth marks often referred to as café au lait spots on her body as a child.
Her pediatrician noticed them and suggested Shylah undergo testing. That’s because the spots are often a calling card for a genetic condition called neurofibromatosis.
Dr. Renee McNall-Knapp from Jimmy Everest Cancer center explains “Most people who have NF live normal lives, but about ten percent of kids with it develop a specific type of brain tumor which involves the optic nerve: the eye nerves."
Dr. McNall-Knapp has been Shilah’s doctor since she was an infant, and testing revealed Shilah did have NF and did indeed have a tumor in her optic nerve.
It was small, and posed a threat only if it started growing.
"It could cause blindness, seizures, it's right next to her pituitary gland, could affect hormones and growth and all that."
The tumor did speed up Shylah’s growth. She is taller than most eight year olds.
However, it wasn’t until last January that doctors realized the tumor was also threatening her vision.
Shilah is now undergoing regular chemo-therapy treatments to stunt the tumor’s growth.
At a recent visit, before administering the chemotherapy drugs through a chest port, the nurse asked Shilah “Are you ready.” She responds “I was born ready!”
Clinic staff have noticed Shilah’s quiet, calm determination.
Her parents remember her reaction to the news that about chemo treatments.
“She was like don't be scared, and don't be mad at God because he picked me to do this. And if something happens that I don't make it, I know where's I'm going.
Shilah loves playing softball and playing card games with her family.
When asked about how she sees the future, she simply says “God made me strong.”
Both Shilah and her family say they love the staff at Jimmy Everest Cancer Center.
In fact, Shilah dressed up as a doctor for a Halloween party at the clinic to look just like Dr. McNall-Knapp.
She knows she has a good medical team on her side and family that is rooting for her.
If you’d like to help children like Shilah fight cancer, consider donating to JECFriends.org.
'Kids with Courage' is sponsored by the Jimmy Everest Center.