By Alison Parker | Photos by Brian Prescott, Matt Schmachtenberg & Jacob Warner
He was 13 when he learned he had a tumor. Six years later, he’s a vocal performance major with a full head of hair to remember the cancer he beat.
Jacob Warner is the student you may see singing in the Music Building — the one with the wavy blonde hair that hangs all the way down to the small of his back.
Some mistake the sophomore vocal performance major for a hippie. But there’s more behind why his hair is so long and even more meaning to why he sings.
Jacob, who’s now taking 21 credits almost every semester to complete the 126-hour vocal performance program, was diagnosed with Ewing’s sarcoma at age 13. This malignant bone tumor accounts for only 1 percent of childhood cancer patients. If caught early, it can be treated in 50 percent to 75 percent of all cases. Jacob was only in eighth grade when he found out.
He’s been growing his hair ever since he ended treatment and plans to donate it once he works up the courage to enter the barbershop.
“I’ve always set a date, and it hasn’t happened,” Jacob said. “That’s happened several times. It sort of has become an integral part of me.”
He had pain in his left shoulder for about two years before he found out — a throbbing pain he could never quite pinpoint. It got to the point where he was almost completely unable to move his arm, maybe just an inch or two. His mother, Amy, made an appointment with a chiropractor in their hometown, Gloucester, Va.
The chiropractor examined his arm and said it was simply growing pains. He suggested Jacob exercise and work his arm out more. Two months passed, and Jacob’s shoulder flared again. He went to the emergency room to get it checked out.
“He said, ‘Oh, you have tendonitis,’ ” Jacob said. “He just poked and prodded for a few minutes, no X-rays or CT scans or anything.”
The doctor then prescribed a muscle relaxer. But about a week later, Jacob’s shoulder was bothering him again. Amy took her son to an orthopedic doctor. He immediately X-rayed it.
“That was the first time someone actually said, ‘You have a tumor,’ ” Jacob said. “I felt strangely unemotional at the time. I think it was a little bit of shock.”
Though a nurse herself, Amy felt completely helpless.
“When I saw the results of the MRI, I thought, ‘I’m a nurse. I should have known this all along,’ ” Amy said. “I felt like I let him down because I didn’t catch it earlier. It took a long time to get over that feeling.”
Amy scheduled a biopsy and a week after the procedure, a doctor confirmed Jacob had Ewing’s sarcoma. His next step was getting through chemotherapy. Jacob was in the hospital every other week for a total of 14 treatments.
You’ve sort of lived and made life-or-death decisions. Once I had been through all of that, I had to find people who could accept this 40 year-old trapped in a 16 year-old’s body.
“Fatigue is the first word that comes to mind,” Jacob said. “It could be the Sunday before I started the five-day treatment, and you still feel like you haven’t slept in two or three days. It’s a different sort of tired than anything I’ve ever felt.”
Waking up in the mornings after treatment was physically a chore, as he’d struggle to sit up and put his feet on the ground.
“Cancer survivors, years down the road … when they get sick, it’s nothing,” Jacob said.
Jacob had to withdraw from his eighth grade classes for the rest of the year. Three weeks into treatments, Jacob started losing his hair.
“I didn’t want people to see me as sickly or weak,” Jacob said. “Once it started to happen, I remember being in the bathroom pulling my own hair out.”
Family members and others shaved their heads to show support, including his best friend, Stephen Sigmon.
“It was hard,” Stephen said. “I knew he was in pain, and I couldn’t do anything to help him except be there for him like that.”
Jacob didn’t share much with those around him, except for one person: Sally Demuth, his sixth grade math teacher. She, too, was going through chemotherapy at the same time.
“She wrote me a letter, saying, ‘Good luck, I know how you feel, these are some things you can expect to happen, these are things people will start assuming about you,’ ” Jacob said.
They sent emails to each other while he was in the hospital and became close over the next four years. But in her third battle against cancer, she didn’t survive.
“It was very hard for me and my whole family,” Jacob said. “She was the nicest woman. My family came to love her, too.”
But Jacob still holds on to one of his most valuable memories of her: a quilt she hand-stitched for him to bring during chemo, which usually makes patients feel very cold.
“One of my treatments made me very hot, but I still brought it with me,” he said. “To this day, it’s probably the one material possession that’s the most important to me.”
Nearly six treatments in, Jacob underwent surgery to remove the tumor. In January 2007, a doctor cut out the bone from his shoulder all the way to just above his elbow.
After recovering from surgery, he had the last eight chemo treatments before having 28 radiation therapies to get rid of any cancerous bone cells left behind.
On June 21, 2007, Jacob was officially cancer-free. His next challenge began: high school.
“I had to come back to a new school, at the bottom of the totem pole,” Jacob said.
In middle school, Jacob had played trumpet in band. To play in the high school’s band, the director required students to participate in marching band. But after Jacob’s shoulder surgery, he couldn’t hold his trumpet in position.
“He found himself in music,” Amy said. “When that was taken away from him in high school, he was afraid he’d lose himself.”
He grew apart from most of his friends and spent freshman year trying to find his place.
“Jake’s entire life, he wanted to be an architect,” Amy said. “All of a sudden he came to me saying, ‘I think this is what I want to do. I think I want to go to college and sing.’ I knew he had this voice, and it made me happy that the world was going to hear it.”
At JMU, Jacob, a tenor, was accepted into the vocal performance program.
“He is a deep thinker, a hard worker and not afraid of a challenge,” said Brenda Witmer, Jacob’s voice studio professor. “I think the thing I love the most about Jacob is his integrity. Whether he is performing or giving his thoughts about his songs, vocal technique or his life, he is always supremely honest.”
Since he’s been here, he’s found his direction.
“I used to use the term ‘loss of innocence,’ ” Jacob said. “You’ve sort of lived and made life-or-death decisions. Once I had been through all of that, I had to find people who could accept this 40 year-old trapped in a 16 year-old’s body.”
Amy chooses to look at her son’s fight as a challenge they’ve overcome and learned from.
“Do I wish my child never had cancer? Yes, I do,” Amy said. “But I also look at the other things that came out of it. It was a blessing in disguise. As a family, we grew because of it. It taught us about ourselves, our family and our faith.”