Kaylee Long

“On March 12, 2012, Kaylee Ann Long blessed this world,” states her mother Sheila. “She was born healthy and normal and was a much easier birth than her brother Rylan.” Kaylee progressed normally up until her nine month wellness checkup, when it was discovered that her growth had plateaued, which caused them concern. “We noticed that she was never hungry and was not interested in any foods.”

The Parents as Teachers worker assigned to us questioned Kaylee’s head tilt. We clearly didn’t recognize it as we were around her on a regular basis,” said Sheila. “The pediatrician recommended an examination by a gastroenterologist, and we were then asked to go to SSM Health Cardinal Glennon Children’s Hospital to be admitted for a calorie count.”

“After the calorie count was complete, I asked the doctors if they could do a scan of her brain to figure out why it seemed there was no connection between her stomach and brain for her never to be hungry,” recalls Paul. On January 14, 2014, a scan of Kaylee’s brain revealed a large tumor on her brain stem. She subsequently had a biopsy which revealed the tumor was adhered to the brainstem and could not be removed. The only recourse was chemotherapy.

“Sixteen months later, thousands of miles traveled, and innumerable times of replaying Willy Wonka and the Chocolate Factory, we had completed chemotherapy,” Sheila says. “Since then the tumor has ceased growing and is now stable. We continue to monitor the tumor every six months, and see several specialists for associative tumor effects including Endocrinology, Ophthalmology, Audiology and Neurology. Kaylee is a normal happy-go-lucky, six year old, who loves high heels, lipstick and fingernail polish. Her life ambition is to become a cheerleader. Make-A-Wish granted Kaylee’s wish to go to Disney World and see the Princesses. Kaylee is now convinced that the Disney Castle is her personal castle and all others can just visit her castle,” Sheila laughs.

Paul states, “The Costas Center doctors and staff have become family to us, because we trust our daughter’s care to them, as if they were family. We were faced with a situation in which we were completely incapable of helping our children. We, as parents had to accept that our children’s health was being threatened, and we needed to trust someone else to help us make the right decisions. We felt a bond and sincerity with Kaylee’s team at Cardinal Glennon. That feeling of trust, meant more than the impending medical bills. Without donors, we would not be capable of receiving care from such highly qualified doctors. We would not have the amazing facility, like the Costas Center, and the staff that care for our whole family.”