Jacksonville, FL - John and Liz Schiefen first started noticing issues before the diagnosis came. It was 2003 and their 9-year-old daughter, Kelsey, was limping on one leg and had problems controlling her bladder.
Doctors performed all kinds of tests. Finally, an MRI was performed at Nemours Children’s Specialty Care.
“At that point they found a very large tumor, about the size of a grapefruit attached to her tailbone and in her stomach area”, John Schiefen said.
It was diagnosed as Ewing Sarcoma, and it had already spread to her lungs. Kelsey’s prognosis rapidly deteriorated.
“It spread, it’s under 20%, she only had a couple of months to live”, Schiefen said.
They explained to Kelsey that she had cancer. “She looked up and said ‘Am I gonna make it ‘till I’m 10?’”. She lived to be 19.
Treatment took the family across the country. They spent months at St. Jude Children’s Hospital.
About five years later, there were complications from chemotherapy and radiation. Kelsey was diagnosed with Osteosarcoma in the same area.
She underwent surgery at the Mayo Clinic in Minnesota. Following a 20-hour procedure, Kelsey needed a wheelchair.
In high school she joined the crew team, and loved every minute of it.
“A few years later it came back, but there were no more surgical options. They tried different experimental approaches and stuff like that, but eventually it took her”, Schiefen. John calls Kelsey the bravest person he’s ever met.
Their first experience meeting the Child Cancer Fund was meeting the Child Life Specialist, Miss Joli.
“It changed the experience completely. Joli was there for ten years with us. She’d turn up, I don’t know whether we contacted her or she was just there. If there was a visit, there was Joli”, Schiefen said.
He said Joli convinced Kelsey to go to Camp Boggy Creek for a family weekend, and it ended up being her favorite place in the world.
“Everywhere we went and everything we did, there was always Joli to help back us up and give us that support”.
There is a playhouse with Kelsey’s name at the Oncology Department at Nemours Children’s Specialty Care to brighten the spirits of children during their treatment.