Video: A former patient shares advice ahead of annual walk benefiting Duke Children's Hospital
When Ryan Cook was 3 and living with his family in Huron, Ohio he was diagnosed with leukemia and treated successfully in Cleveland.
After his recovery, Cook was healthy for about a dozen years, entered high school and was playing wide receiver and a little defensive back for his freshman football team. He had great grades. Tall, sturdily built with sandy blonde hair and bright blue eyes — popular, too — life was going great for the all-American kid in the Rust Belt town.
Then his running slowed down in football practice.
“The coaches thought I might have had a groin pull,” Cook said.
Just to be careful, Cook got an MRI.
There were cancerous cells at the base of his spine, hampering his central nervous system.
He returned to Cleveland for treatment and chemotherapy and came to Duke Hospital for a bone marrow transplant and his leukemia went back into remission.
He holds that Duke Hospital and specifically physician Joanne Kurtzberg almost certainly saved his life.
Kurtzberg is a much lauded Pediatric Bone Marrow Transplant Specialist at Duke Hospital.
“Once a patient relapses, the only cure is a bone marrow transplant,” Kurtzberg said. “He was lucky that he had a match in his family. His younger brother was a match.”
Cook’s younger brother donated a portion of his own marrow for the transplant.
“Dr. Kurtzberg created much of technology that is now used for bone marrow transplants,” Cook said.
When child or adult has leukemia or when they are first diagnosed, they are treated with chemotherapy usually over two to three years.
“Maybe one in five people who go through that treatment ultimately relapse,” Kurtzber said.
Once a relapse occurs, standard chemotherapy can no longer be used because the standard chemo didn’t eradicate all the leukemia cells.
“In Ryan’s case, he relapsed in the blood, the bone marrow and also the brain, which is not uncommon but means he had to have more intensive treatment,” Kurtzberg siad. “He came to Duke where we gave him a very high dose of chemotherapy that would really kill you, if he didn’t get a transplant.”
Cook received whole-body radiation which included his brain and spinal column to prevent the leukemia from recurring in those places. Such treatment wiped out Cook’s own bone marrow, which is required for life.
After nine days of radiation, Cook received a transfusion of his younger brother’s bone marrow cells.
“It’s kind of like planting seeds in a garden. The cells that go in your blood and go back inside your body,” Kurtzberg said. “And after three to four weeks, his own blood cell counts would have completely gone away and recovered with cells from the donor and rebuilt the blood system.”
After leaving the hospital and after his recovery and after graduating as a valedictorian from N.C. State University, when Cook was in his mid-20s he began to mentor teens being treated for cancer at Duke Hospital.
Cancer is hard. Being put in isolation, in hospital, as a teenager — when all your previous concerns were friends, music, who-kissed-who and who you wanted to kiss yourself — can be physiological devastation.
“I told them to stay positive, over and over, and messages like that,” Cook said. “What else is there to say, really?”
On Saturday, May 6 Cook, now 35, will take part in the The Rainbow of Heroes Walk at the Duke Center for Living Track, 3475 Erwin Road.
The event commemorates and celebrates all Duke Pediatric Blood and Marrow Transplant patients and their families.
The Walk is the primary fundraiser for the Duke PBMT Family Support Program and a reunion for patients, families, nurses, therapists, doctors, volunteers, and supporters who have come to know each other through the months-long transplant process.
Rainbow of Heroes Walk
Here’s a look at today’s Rainbow of Heroes Walk schedule. The event will take place at the Duke Center for Living Track, 3475 Erwin Road.
▪ 9-11 a.m. — Games, Bounce House, Music, Rainbow Raffle
▪ 11 a.m. — Patient/Sibling Pictures
▪ 11:15 a.m. — Walk begins
▪ Noon — Recognition and Balloon Release
▪ 12:30 p.m. — Lunch