Cancer center helps rebuild lives

Carolyn Burnett was on vacation in Florida, teaching her young son to swim, when she noticed bruises on his legs.

A week later, Edwin, then 2, was rushed to the UNC Lineberger Comprehensive Cancer Center with swollen organs and a white blood cell count of 87,000 - significantly higher than it should be.

He was diagnosed with leukemia and a 30 percent chance to live.

The diagnosis was a shock - despite his bruises, Edwin had seemed fine, Burnett said.

"Kids are so resilient, it's hard to know when they are sick," she said. "When they're that little, they don't know how to tell you they're sick."

Burnett's doctor told the family that Chapel Hill was the only place to consider going for treatment.

He immediately referred Edwin to the Lineberger Center, one of 40 National Cancer Institute-designated comprehensive cancer centers in the country.

Established in 1975, the center treats patients, conducts research, develops prevention programs and trains doctors and scientists.

"One of the things that sets us apart is that we're a comprehensive cancer center," said Michael O'Malley, the Lineberger Center's associate director for administration and planning.

"We focus on the fundamental science that lets us know how cancer behaves and how we might intervene, as well as treatment and preventative care."

Its methods worked for Edwin, now 10 and healthy. He has taken up swimming - an activity he could participate in even while sick.

O'Malley said the center has treated at least one patient from each of North Carolina's 100 counties.

"One of the things we bring to patients is the real ability to see cancer as a whole," he said. "We care for the whole patient at once."

And sometimes, the center cares for whole families: Brothers Oscar and Carnell Evans of Oxford received treatment at UNC after they were diagnosed with prostate cancer in 2001.

"My doctor sent me right to UNC," said Oscar Evans, 66, who has since recovered. "It wasn't difficult. It was easy - I have a chipped bone in my leg, and that's my biggest pain right now."

Oscar Evans underwent surgery and radiation; his brother underwent surgery alone. Carnell Evans is now recovered also.

The whole experience at UNC was memorable, Oscar Evans said. "I can't specify nothing," he said. "Everything they done was real nice."

Burnett said the way the center's staff dealt with patients helped her family through the ordeal.

"I've never met a more caring and dedicated group of doctors and nurses," she said. "It's hard to believe that you could be coming in for chemotherapy and feel fortunate, but we did."

Doctors at UNC gave Edwin twice the amount of chemotherapy that children usually receive. After 3 1/2 years of treatment, Edwin's blood cell count returned to normal.

"There's no rhyme or reason for cancer," Burnett said. "Support is the only way you get through it."

That support came from family, friends and hospital staff.

In eight years, only one nurse has drawn Edwin's blood. Such details have given him trust in the staff, Burnett said.

"Anytime something little goes wrong in his life, he asks to go to Chapel Hill," Burnett said. "That's my son's security blanket."

The center's Patient/Family Resource Center also provides support, offering cancer information, counseling and even loaner wigs to patients and their families.

"Our services help ease the burden a little bit," said Tina Shaban, Patient/Family Resource Center coordinator. "A positive attitude has a big effect on the treatment. Support is part of the whole treatment process."

She said she hopes the center can expand its programs and encourage people to help others.

"My favorite saying is, 'Giving never moves in a straight line, it always moves in a circle,'" she said. "I hope that some of the people we've helped will want to give back."

Burnett has done so already. "Our experience has made us so much stronger as a family," she said. "We are trying to counsel other families that are dealing with it."

A girl on Edwin's swim team was diagnosed with leukemia, and his swim coach was diagnosed with Hodgkin's Disease, she said.

"I don't think we'll ever find a reason for cancer, but I think that we'll find a cure," she said.

Until then, Burnett said she will focus on the future - albeit anxiously.

"You worry every day," she said. "That will always be a part of your life."

Edwin, on the other hand, hasn't looked back. "He says he's going to become the next Michael Phelps," Burnett said. "At one point during his treatment, he took a drug that affected his nervous system.

"His feet were killing him and his arches fell, but he said to me, 'Mom, one good thing really came out of this disease. Now I have flippers.'"

Contact the Features Editor at features@unc.edu.