Joshua Brown was just two months old when his fight began. He’d been experiencing staring spells while breastfeeding, and his parents later found out those episodes were actually seizures.
When he exhibited the same glassy-eyed stare outside feeding time, Joshua’s parents called his pediatrician, who suggested they take him to emergency room at SSM Cardinal Glennon Children’s Medical Center for testing. The ER doctors ordered a CT scan and noticed an abnormality. The next morning, Joshua had his first MRI, and he was diagnosed with Desmoplastic Infantile Ganglioglioma, commonly referred to as a DIG tumor.
Joshua was immediately scheduled for brain surgery; the tumor had to be removed. “Sending a two-month-old down the hall for neurosurgery is insanely difficult,” says Joshua’s mother, Rhonda Brown. She was reassured by the confidence of the neurosurgeons, and they followed through – Joshua’s operation was a success.
Another Test of Strength
The type of tumor Joshua had is often not recurrent, but at nine months old, he started having problems again. He began throwing up frequently and stopped eating. His parents took him back to Cardinal Glennon, and another MRI showed a new growth on Joshua’s brain.
This time, the tumor had spread to so many areas that the neurosurgeons could not remove it. Instead, they took out a piece for a biopsy, which showed it was the same type of growth. At nine months old, Joshua started chemotherapy and switched to an SSM pediatrician, Joseph Silhavy, M.D., who became very involved with Joshua’s development.
Looking back, Rhonda remembers how hard it was to watch her nine-month-old son endure chemotherapy. “He’d start throwing up on I-70, and I’d be trying to hold a bucket back or pull over as fast as I could.”
Joshua came in for an MRI every three months to check his progress. After over a year of chemotherapy, the tumors were stable – they weren’t shrinking, and they weren’t getting any bigger. Since then, Joshua has gotten an MRI every six months, and now, over four years later, there is still no expansion of the disease.
When he was brought in the second time, Joshua was placed on a feeding tube, which remained his source of nourishment for the next three years. “He just didn’t really learn to eat when kids were supposed to,” his mother explains.
At four years old, the Browns visited a behavioral clinic in Hershey, PA, that focuses on encouraging children to eat. There they introduced a system of rewards: Joshua’s parents learned to start a video and periodically pause it until he took a bite, then resume play. It was a complete success. He started eating soft foods, such as applesauce, oatmeal, and pudding.
Joshua reached several milestones at age four. Not only did he come off the feeding tube, he started walking and talking as well.
Joshua is in kindergarten at Whiteside Elementary, where he spends half of his day in a setting specific to special needs, and the other half in the classroom with his peers. Though he is smaller than his classmates, Joshua doesn’t seem to notice too much of a difference.
“We tell him that we have to go get an MRI to make sure he still feels good,” says Rhonda. “That’s really all we say. That’s normal to him – he’s never known any different.”
Now Joshua’s favorite foods include Oreo cookies and cheeseburgers from McDonalds, and his mother couldn’t be more pleased with his progress in that area. “He was so aversive to eating, it’s nice for him to realize food’s not so bad. Some of the things he likes are kind of surprising.”
After more than 15 surgeries at Cardinal Glennon, Joshua is a happy six-year-old boy. He enjoys music, dancing, and watching Elmo, and is currently seeking a new hobby, which might turn out to be karate.