“Nothing’s been normal with Evan,” his father, Kraig, said. “Not in his whole life.”
Evan’s whole life consists of almost three years, and his abnormal childhood began in the womb. Kraig and his wife, Brittany, live in Leary, a tiny town in the southwest corner of Georgia. Doctors discovered a heart defect during a routine ultrasound while Brittany was pregnant. Knowing he would need open-heart surgery at birth, doctors induced labor as early as was safe.
Kraig said it was very stressful knowing their baby was going to need open-heart surgery as soon as he was born. His mind drifted toward the worst possible outcomes, and he worried about both his son and his wife. The surgery was a success, but complications forced more heart procedures over the next few months. Doctors also found a problem called hydronephrosis that resulted in an oversized kidney, possibly due to blockage. That became the next issue facing Evan’s medical team.
To fight these problems, the family had to make many trips to Atlanta where specialists were prepared to help. Depending on the traffic, that trip took roughly four hours each way. And the surgeries weren’t the only thing that forced them on the road. Because of his frail condition, normal childhood illnesses were harder on Evan than the average child.
Still, they rode out the surgeries and illness through his first year of life and felt like they were on the road to recovery. At sixteen months old, Evan was cleared by cardiologists and shortly thereafter had a scan to make sure the hydronephrosis was gone. The scan revealed a mass on his kidney. After surgery to remove it, Evan’s parents were introduced to a new team of doctors: pediatric oncologists. The tumor was neuroblastoma – a childhood cancer that can form anywhere in the nervous system.
The successful tumor removal put Evan into remission, but he quickly relapsed. Since then, he has had multiple rounds of chemotherapy, two bone marrow transplants, and antibody treatment. All of this treatment occurred in Atlanta. In fact, Kraig estimates the family has driven that well-worn path over one hundred times in the last three years. How has Evan taken it?
“Right now, you wouldn’t know he has health problems if you didn’t see the scars,” Kraig shared. “He loves to be outside and sit in my lap for a ride around the fields.”
Of course, it would be hard to miss his scars. By Kraig’s count, Evan has around ten of them on his tiny body: two from open-heart surgeries, two from the tumor removal, and six from chest tubes he has had over the years. He also has a gastric feeding tube that has been crucial for nourishment.
Evan is currently receiving antibody treatment, a type of immunotherapy where agents designed to attack cancer cells are introduced into the body. This targeted therapy seeks to kill the cancer without damaging healthy cells. CURE has invested heavily in such innovative research with the hopes of speeding it to the bedside of children who need it – children like Evan.
During Evan’s battles, Kraig has felt overwhelming support from their community and his employer, the Coastal Plywood Company. But he is quick to point out the most important member of his team.
“If it wasn’t for Brittany, I don’t know where we would be,” he said. “She keeps up with all of Evan’s appointments and medications and makes sure he gets everything he needs. We’d be lost without her.”
Doctor’s estimate Evan has six months left in treatment before he can put cancer in the rear-view mirror. Kraig said he will keep driving as long as it takes to give Evan a normal life.
“I don’t want much,” he explained. “I just want us to be a family again.”