SYRACUSE — Brandon Winger has a smile that could stop you. But behind that smile is a 12-year-old who is battling a very adult disease.
Brandon was diagnosed with spindle cell sarcoma last March. During a wellness visit, Brandon's doctor noticed something wasn't right.
"I was off to the side of Brandon, and (the doctor and I) could see a mass poke out of his stomach," Brandon's mother, Kathy, said. "It actually looked like he was about four months pregnant."
The mass ended up being 5½ inches by 5½ inches.
"I just kept thinking how did he have this mass for so long and something that big and nobody knew about it," Brandon's father, Dan, said.
Doctors at Primary Children's Medical Center told Kathy Winger that Brandon had a rare and aggressive type of cancer. They hadn't seen spinal cell tumors in about 20 years and, even then, they are typically found in men who are 40 and older.
Unfortunately, the treatment is targeted to that age group. Brandon underwent surgery, chemotherapy and radiation, only to receive more bad news a month later.
"We had gotten the call (from doctors). They had found some spots in his lungs, his kidneys and his liver," she said.
Brandon was later diagnosed with malignant peripheral nerve sheath tumors, MPNST. He continues to undergo radiation and chemotherapy every two weeks.
"You're pumping this stuff into his body, and you're doing it because people say that's what you should do, or that it is really going to help one day," Kathy Winger said.
The treatments have taken a toll on the young man. Kathy Winger says her son is often very tired and out of breath. "Even going up three stairs, he gets out of breath. He can't do anything," she said. "He sleeps all the time."
The treatment caused all of his fair hair to fall out, including his eyelashes and eyebrows.
Despite the difficult battle, the family remains optimistic. On Tuesday Brandon will have his first scan after having chemotherapy and radiation.
"We're just hoping for better results," Kathy Winger said
In the meantime, the seventh-grader keeps up with school work through classes online. "He can go to school when he's well, and he can do work at home on the computer when he doesn't feel well, or we take it to chemo and he can do it on the computer," his mom said.
What Brandon cannot do is play football, a sport he loves. "This is the first summer he hasn't been able to play football," she said. "That broke his heart."
Despite being tired from chemotherapy, Brandon tries to stay active playing with his brother and five sisters. Recently, he was able to go hunting with his father through Hunt of a Lifetime.
"Brandon came home that night and he still had a smile on his face," his mother said. "He said that his cheeks hurt so much because he could not quit smiling. At least while he was hunting, he could forget for a little while that he had cancer."
To keep that smile on his face, a community fundraiser is being held for Brandon by Anything for a Friend on Saturday, Dec. 3. The event is being held from 5-9 p.m. at the Syracuse Community Center, 1912 W. 1900 South in Syracuse.*
The treatment is costly, and while Brandon's family does have health insurance, their coverage does not pay for all of his medical expenses.
E-mail: lprichard@ksl.com