Becky Snell knew there was something wrong with her daughter, Ambie, who had started experiencing frequent nosebleeds at age five. After a chromosome test revealed she had a blood disease called myelodysplasia, they decided to be aggressive and treat the disease with a bone-marrow transplant. None of Ambie's five siblings was a suitable tissue match, so under the care of Dr. Jean Sanders at the Hutchinson Center, she underwent the first of two transplants using unrelated donors.
"She turned six when she had her second transplant," remembers Snell. "She had her birthday party in the intensive-care unit."
Now 19, Ambie and her mother came to Seattle from Pocatello, Idaho, for the Center's Patient Reunion, July 29-31, to celebrate being 13 years disease free. "I can't remember the last time she went to the doctor," Snell said, reminiscing in the lobby of the Thomas Building. They had just finished taking snapshots with their old friend Jay Feinberg when Snell was suddenly overcome with emotion, trying to hold back tears as Feinberg waved and continued down the hallway.
"He was in the hospital the same time as Ambie, but he had such a hard time finding a donor," she said. They checked out before Feinberg found a donor, so they never learned his fate, and her relief at seeing him showed. "I'm just so happy he's here!"
Tears of joy, celebration and remembrance were never far from the surface for the 320 transplant survivors who gathered at the center for the Patient Reunion. Held every five years since 1988, the event is a way for survivors, their families and caregivers to celebrate life and reconnect with the doctors, nurses and staff who helped them through their lifesaving — and life-changing — transplants. This year's reunion, themed "Legacy for Life," was for patients who had transplants before 2001.
Joy and remembrance
"It's like being part of an exclusive club that you didn't ask to join," said Ross Major, who came with his wife, Correen, from Sioux Falls, S.D., to mark the five-year anniversary of his mini-transplant. They were in the lobby of the Thomas Building reminiscing with friend Jacquelyn Hightower, who came with her husband, Steve, and daughter Madeline from Winter Park, Florida. The two families became close friends during the six months they spent together at the Pete Gross House in 2000 while Major and Hightower were receiving their transplants. They started a regular music session on Thursday nights and had theme nights for Monday night meals.
"We tried to make light of the heavy situation," said Hightower, who had a transplant to treat a rare form of acute lymphocytic leukemia. The camaraderie they shared during those tough months is still evident.
This year's reunion was the largest in the Center's history, and was special for another reason — it marked the dedication of the new patient-recognition wall recently installed outside the Sze conference room (see sidebar). In addition to the ever-changing survivor photographs shown on the plasma screen, one of the more intriguing features of the wall is the delicate spiral tracing the progress of transplantation, starting with the year 1969, when six transplants were performed. As the spiral unfolds outward, the tally of transplants grows until it arrives at the year 2004, when the cumulative total reached 10,140.
Today, 36 years after Dr. E. Donnall Thomas and his colleagues conducted the first successful bone-marrow transplants in Seattle, the Center and its partners conduct approximately 450 transplants a year. Directly due to research pioneered here, more than 40,000 bone-marrow and stem-cell transplants have been performed in 48 nations around the world. Thomas, a 1990 Nobel Laureate, and his wife and research partner, Dottie, presided over the weekend's events.
"People always ask me if getting the Nobel Prize was the greatest thrill of my life, and I say, 'Absolutely not,'" Thomas said. "Getting together with patients 20 to 30 years later is the greatest thrill I've ever had."
The weekend was a reunion for the physicians, scientists and nurses as well. Sanders met many former patients during Friday's buffet dinner in the courtyard. "It's really gratifying to see all these kids grow and develop," said Sanders, who has been involved in nearly every one of the pediatric transplants at the Center. "It's really heartwarming to be here."
Dr. Robert Hickman, who developed the catheter many patients come to rely on during transplant, attended Friday's dinner with his wife, Lucy. "To be honest, it's a bit emotional," he said, as another former patient steps up for a picture and a hug.
For some survivors, the reunion brought back difficult memories. "Coming here has reminded me of many things I haven't thought of in years," said Denise Simons, who had a bone-marrow transplant from an unrelated donor in 1992. "It was a very traumatic time, but I'm so grateful for every single day," she said. "At first, I just wanted to live long enough to see my daughter graduate from high school." Not only did she live to see that, she's also lived to see her first grandchild — who is now 8 years old. She was here with her mother, Barbara Landier, her caregiver during the transplant. (A happy side effect of the transplant: Both mother and daughter fell in love with Seattle and have both since moved here from California.)
This weekend was also emotional for Chris Lundy, who is 34 years post-transplant and attending his first reunion. In 1971, he received a bone-marrow transplant for a rare form of aplastic anemia. In the years since, he hasn't talked about it much — "I guess I chose to close that door," he said — but he drove north from San Diego so he could once again meet his doctors: E. Donnall Thomas and Rainier Storb.
To others, like Lloyd Briscoe, these events are a way of staying connected to a very unique family. In fact, he hasn't missed a reunion since he underwent a bone marrow transplant in 1978 for leukemia. Now, in the many years since, he says he "doesn't worry, doesn't stress and lives a very full life." His wife, Bonnie, just started treatment for breast cancer, and said Briscoe is a great support to her. "He doesn't let me be negative," she said. "He's a great coach."
Highlights of the weekend included private concerts Friday night at Benaroya Hall by the Total Experience Gospel Choir and country music star and cancer survivor Kevin Sharp. Sharp delivered a stirring keynote address recounting his ordeal with cancer, but kept the evening lively by bantering with the audience and his band. Jay Feinberg, founder of the Gift of Life donor registry, emceed the evening. He received cheers and applause of support after announcing that it was 10 years ago — to the day — that he received his transplant. Clinical nurse Judith Campbell was given special recognition, as well, for her tireless work with patient care and long-term follow-up.
On Saturday, attendees took part in workshops hosted by Drs. Sanders, Paul Martin and Jerry Radich, Mary Flowers and Karen Syrjala. Sunday's closing reception at Benaroya Hall featured the official dedication of the patient recognition wall, and remarks by Dr. Lee Hartwell, president and director, and Martin, physician-researcher and director of the Long-Term Follow-Up department. Both acknowledged the critical part every patient has played in advancing the transplant process. As the science develops, doctors work to find less-toxic treatments, improve post-transplant quality of life and dramatically increase survival rates.
'We are forever indebted to you'
"None of this would have been possible without you," Martin said. "We recognize that we are forever indebted to you."
The ceremony ended with heartfelt standing ovations for the Thomases, Hartwell, Martin, and Percy Randle who, after his transplant in 1983 for chronic myelogenous leukemia, returned to the Center as a chaplain and counseled hundreds of patients during his 14-year tenure. Earlier in the weekend, he attempted to put into words what the reunion meant to him.
"I guess I get so emotional because I see so many people who were struggling so hard to survive — and now they're back here, looking so well," Randle said. "When they share their stories with me, it gives me such hope for the future."