Every family affected by child cancer has a unique journey, yet they all share something in common: they all begin with heartbreak and fear.
In an instant, a completely normal life full of schoolwork and playdates suddenly turns into dozens of hospital visits and procedures.
Carolina Parson and her family experienced this two years ago in Jacksonville when she was diagnosed with medulloblastoma, a brain tumor.
“The unknowns,” says her father Kris. “You have no idea what to expect.”
Carolina’s mother Tabatha remembers what she was thinking in early 2014 when she first walked into Wolfson Children’s Hospital.
“Walking in there not knowing what in the world,” she says. “All we know is we just had a tumor removed and not knowing what to expect and what you’re going to hear.”
Before the tumor was taken out, Carolina stopped breathing and became unresponsive. Doctors had to drill a hole in her head to relieve pressure.
“We almost lost her that night,” Kris says. “The brain tumor had shut off the ventricles that allows the fluid to go down your spine. But God’s been good. She went through an eleven-hour brain surgery the next day, and they were able to get it all, which is a huge blessing.”
Kris says they thought they were in the clear when they were told the tumor was removed, but they were far from done. Doctors told them their daughter could not be considered “cancer free” at the time, and she had a 70 percent chance of survival.
Kris and Tabatha, new to child cancer at the time, feared for their daughter’s life. They didn’t realize at the time that 70 percent is actually an amazingly high number.
“Perspective,” he says. “Seventy percent…some people would kill for a seventy percent diagnosis. It changes your perspective big time. Other things in life don’t really matter anymore.”
The Parson’s sought treatment at Wolfson, Nemours and the UF Health Proton Therapy Institute. Carolina went through seven rounds of chemotherapy and 30 rounds of proton radiation. Right now, two years after Carolina’s tumor was removed, every MRI and spinal tap has been all clear.
Now that life is becoming more normal, the Parsons have decided to give back.
“We would love to be able to help families,” Tabatha says. “Encourage them, support them emotionally, financially spiritually – and just be there. And we’re not sure where all that’s going to lead us quite yet.”
Kris says he remembers seeing single parents waiting alone in the hospital waiting room.
“Just heartbreaking really to see that,” he says. “We just want to do whatever God wants us to do to meet needs along the way, especially for those that are hurting and feeling alone. Child cancer can obviously take you to a very dark place.”
Tabatha says they want to do something to help families; they’re considering equine therapy.
“We are not immune to anything,” she says. “Childhood cancer can affect any family.”