Seven-year-old Zachary Clinard hugs Vanderbilt University student Brook Thompson, his favorite volunteer in the Pediatric Hematology-Oncology Clinic. (photo by Dana Johnson)
Pediatric stem cell transplant program restores hopes, lives
Kelsey Thompson poses with Dr. Haydar Frangoul. (photo by Dana Johnson)
As Dr. Haydar Frangoul enters the examination room, Kelsey Thompson has two surprises for him – a new necktie and a head of bouncy black curls.
“You know, I have never seen you with hair,” Frangoul notes as he examines Kelsey’s skin for signs of graft-versus-host disease, a common complication after bone marrow transplant. He pronounces her well but notes that her next visit will be a “mini-marathon” of tests because it will have been one year since her transplant.
When Frangoul joined Vanderbilt-Ingram Cancer Center and Vanderbilt Children’s Hospital in late 1999, Kelsey had already undergone treatment for a recurrence of acute myelogenous leukemia and had lost her hair as a result. A few months later, Kelsey became one of Vanderbilt’s first patients to undergo a bone marrow (stem cell) transplant from an unrelated donor.
Frangoul and Dr. Friedrich Schuening, Ingram Professor of Cancer Research, joined Vanderbilt at about the same time – Frangoul to direct the pediatric stem cell transplant program and Schuening to direct the program for adult patients. Since that time, a number of enhancements have been made to both programs, including: pursuit of voluntary accreditation by the Foundation for the Accreditation of Hematopoetic Cell Therapy (FAHCT); the addition of “mini-tranplants” to the services for adults; plans are under way to expand the treatment area for adults and move toward outpatient transplants; the replacement of serologic testing with aggressive and more accurate DNA typing; and the offering of the full gamut of transplants for pediatric patients.
These pediatric services include peripheral blood stem cell transplants as well as bone marrow aspiration, umbilical cord blood transplants, autologous transplants (where the patient is his or her own donor), and transplants from matched related and unrelated donors.
“We now are a truly comprehensive pediatric bone marrow transplant program and can offer any type of transplant that a family needs, for solid tumors and leukemias,” Frangoul said. “As a result, we are becoming more and more THE referral center for families in East and Middle Tennessee and southern Kentucky.”
Kelsey is now a thriving sixth-grader who takes lessons from a home-bound teacher twice a week but who is anxious to return to her school in Marion, Ky., this spring. She takes 10 different medications to prevent transplant rejection and infections.
With all the bad things about being in the hospital for weeks at a time, Kelsey can find some good in the experience: “Getting to meet famous people,” Kelsey said. “I met Patty Loveless, Martina McBride, Clint Black, Trisha Yearwood, Vince Gill, Montgomery Gentry, Lonestar…”
An even bigger honor would be meeting her donor. All she and her mother know now is that the donor was a 37-year-old woman who had never been pregnant – and who was thoughtful enough to send a card and a Harry Potter book along with her donated marrow. “I don’t know what I’d say to her,” said Kathy Thompson. “What do you say to someone who saved your child’s life?”
In a dimly lit room in Vanderbilt Children’s Hospital, Kaleena Escobar quietly waits. The smoothness of her head accentuates the beauty of her deep-set brown eyes and striking cheekbones. She’s been through chemotherapy, radiation and surgery before, to defeat the fist-sized tumor at the base of her spine. She knows that while she feels pretty good today, she will feel much worse before she gets better. Still, she passes the time patiently, watching movies with her mother and doing art projects.
The 17-year-old is participating in a clinical trial to test whether high dose chemotherapy followed by stem cell transplantation can improve outcomes for pediatric patients with solid tumors. In these patients, the bone marrow itself is not “sick,” as it is with leukemias. But the transplant allows much higher doses of chemotherapy.
For Kaleena, the hope is that the chemotherapy will kill the tumors – Ewing’s sarcoma – that have now appeared in her lungs. But it will also wipe out her bone marrow, and with it her ability to make new blood cells and fight infection. Next week, she will be “rescued” with an infusion of her own stem cells, immature cells that “grow up” to become oxygen-carrying red cells, disease-fighting white cells and clotting platelets. These cells will travel to the hollow spaces in her bones and slowly begin to replace her bone marrow.
Kaleena says the hardest part is being unable to leave her specially filtered room. Her eyes brim with tears when she’s asked what that’s like. Her mother speaks instead. “We’ve watched a lot of videos, and she made that calendar,” said Shalatta Escobar, a single mother with six other young children at home in Ewing, Va.
The hardship on patients and families is not lost on faculty and staff at Vanderbilt. The new Monroe Carell Jr. Children’s Hospital at Vanderbilt, now under construction, will include a specially filtered unit that will allow pediatric patients to leave their individual rooms safely to eat with their families in the kitchen or enjoy the playroom. The rooms will also be designed to provide more comfortable accommodations for parents to stay with their children.
“That will be a major improvement for our families,” Frangoul said.
“You want to hear my music?” Zachary Clinard asks a visitor to the outpatient pediatric cancer clinic. With the push of a brightly colored button on his Fisher Price tape player, the music of southern rock band Lynyrd Skynyrd begins.
Seven-year-old Zach belts out the refrain: “Don’t ask me no questions, and I won’t tell you no lies.” Zach sings with the attitude of a seasoned country music star, his cowboy hat pulled down over his eyes and his pointed boots tapping out the beat.
Zach underwent a bone marrow transplant last summer after a recurrence of acute lymphocytic leukemia and now visits the clinic once a month for follow-up examinations. Through luck or fate, his mother Shelley was a bone marrow match and became his donor. “It was a miracle,” Shelley said. “I gave him life once, and I wanted to do it again.”
A matched, related donor is Frangoul’s first choice because the risk for complications is lower than a transplant from an unrelated donor. Second is a matched, unrelated donor; third, cord blood. It’s the “Seattle way of thinking,” Frangoul said, referring to Fred Hutchinson Cancer Center, where bone marrow transplants were pioneered 30 years ago and where Frangoul trained.
He is now working with his colleagues at Vanderbilt and across the country to help pioneer new advances in the field. Frangoul and his colleagues are participating in several clinical trials to improve care, including the study of a new agent to prevent fungal infection.
Shelley Clinard is looking toward the future, too – a future without cancer. “I want to get all this behind us and never think about it again,” she said. “Then I want to finish high school. And I want Zach to finish school, too.”