As a cross-country runner, Justin Berry is no stranger to leg injuries. But what the 14-year-old thought was a torn calf muscle in August 2014 turned out to be much more than a common running injury and changed his life forever.
“It was our first real practice, and my leg started hurting after running a few minutes,” Berry said, recalling the memory. “By the time I got to the end of the course, I couldn’t really stand on it.”
East Hall Middle School’s cross-country coaches called Berry’s mother, April Kooistra, and told her about his pain. Kooistra immediately took her son to a quick care center in Gainesville, but the doctors directed her to a specialist for X-rays.
“He couldn’t walk into the doctor,” Kooistra said. “We had to carry him.”
The next day, Berry arrived at the specialist’s office for X-rays and an MRI. The test was supposed to show if the injury was a torn muscle, ligament or other common problem. When the doctor returned with the scans, the family knew it was more than a minor injury.
The photo showed a large growth in Berry’s left shin.
“The doctor was trying to be optimistic, saying it could be a bone cyst or a bone infection or even a benign bone tumor,” Kooistra said.
But it wasn’t any of those possibilities. A biopsy, in which doctors removed a portion of the growth to determine what it was, revealed it was the aggressive bone cancer, osteosarcoma.
Osteosarcoma is most common among adolescents, according to the Centers for Disease Control and Prevention. Symptoms include pain and swelling in the bone, unexplained fractures, fatigue, fever, weight loss or anemia. And sometimes no signs appear.
“A lot of people wait months before being diagnosed because they chalk it up to a normal injury,” said Dr. Thomas Cash, Berry’s oncologist at Children’s Healthcare of Atlanta. “It’s the most common bone tumor that we see in pediatrics.”
Kooistra said she was devastated at the news, but her son remained calm. The mother and son then “turned to their faith” to deal with the initial diagnosis.
Less than a month after his pain arose, Berry began chemotherapy Sept. 1, 2014. He had surgery to insert a port in his chest to receive his treatments. A port is a plastic device with a spongy interior that attaches to the heart, allowing needles to penetrate through one site and administer the chemo drugs. It prohibits a larger amount of needle sticks to the skin.
Kooistra said Berry never shed a tear through the process.
“When he woke up, he reached up and patted the port and just sighed,” she said.
Berry was taken to Children’s Healthcare of Atlanta for inpatient treatment four days a week for seven months. His treatment plan was a cocktail of medicines being poured into his body on a specific timetable. Cash emphasized the chemotherapy for osteosarcoma is “not an easy treatment” because of the intensity of the medicines.
“The (cisplatin and doxorubicin) was the worst one,” Berry said. “I had some aversions, like the green hospital trays made me throw up, and one oncologist had a perfume on that made me nauseous.”
After almost two months, surgeons removed the tumor in his leg. Tests revealed the chemo killed more than 95 percent of cancer cells, which appeared not to spread beyond his leg.
To repair the damage, Berry received a replacement part.
“They put in a cadaver bone from a 33-year-old woman and took some of my calf muscle and put it on top,” Berry said. “Then they put two metal rods in my leg to hold it together.”
Berry now has NED status, meaning no evidence of cancer is detected in his body. Doctors give him an 85 percent chance of survival, which is the best they offer osteosarcoma patients. Cash noted osteosarcoma patients do not receive remission status for at least five years because of the high chance of relapse.
“About 30 percent of patients will relapse, and most happen within those five years, but some are much later, even 10 or 15 years after treatment,” the oncologist said. “The most common place to relapse is in the lungs.”
A relapse in the lungs is even more dangerous than the tumor in the bone and requires different treatments. Doctors hope to catch any relapses early to improve the patient’s chances. This means Berry still has frequent trips to the doctor.
“We have to go in every three months for the next five years for scans,” Kooistra said. “Dr. (Thomas) Olson said (Berry) was one of the best chemo patients he had seen in 10 years.”
Instead of losing weight as most chemo patients do, Berry actually gained 25 pounds, his mother pointed out.
“Justin has done well,” Cash said. “The fact that he’s made so much progress shows how hard he’s worked, which is not surprising knowing his personality.”
Berry finished his last round of chemotherapy April 8 and began walking without crutches several weeks ago. He wasn’t supposed to walk on his own until August, but Kooistra mentioned her son does everything ahead of schedule, including school work.
“He only went to school for two weeks (in 2014), but he completed all of his honors class work and finished the year at the top of his class,” Kooistra said. “He received nine academic awards.”
The student didn’t see many of his friends while he was in the hospital each week, so he did his school work and read.
“People would send him Amazon gift cards,” Kooistra said. “He probably read 75 books while he was in there.”
When he was home on breaks for treatments, however, several friends filled the house.
“When his immune system was good, one mom would go pick up a bunch of his friends from school and they would come here and have a pizza party and play Xbox all night,” Kooistra said. “They kept things normal for him.”
Since his recovery, Berry shares his story with others, recently speaking at Matt Ryan’s celebrity golf tournament. He also has taken two trips with his family to celebrate being cancer-free.
“Dad and I went to Myrtle Beach for four days, and then mom and I went to the beach with a group called Blue Skies last week,” Berry said.
He has two camping trips planned along with a trip out West for big game hunting with Catch-A-Dream, an organization that plans outdoor trips, fishing, hunting and more for sick kids.
Berry also has speaking engagements scheduled locally and as far as Carrollton. He will participate in WSB’s Care-a-thon on July 20 and 21 on 95.5 FM and 750 AM radio. He plans to begin running again as soon as possible and has a new career path thanks to his experiences.
“I want to go to UGA and become a physical therapist to help veterans,” Berry said.