It was a reunion two years — and for some, decades — in the making, a gathering of blood cancer patients young and old, all of whom had survived a blood or bone marrow transplant at Fred Hutchinson Cancer Center, many while it was still an experimental technique.
Originally planned for 2020 but delayed due to the pandemic, the Hutch’s eighth Blood and Marrow Transplant Reunion was held Saturday on the Hutch campus with nearly 250 people gathering beneath a partly cloudy sky to commemorate their collective achievement.
“We’re all here to reconnect with the Hutch, to reconnect with other survivors and their families, and to remember the patients and families not as fortunate,” said former patient and attorney Marc Smith, 71, in his keynote speech. “I’m from the ‘graduating class of 1990.' Now, I feel like I’m returning to my alma mater for a commencement speech at graduation.”
The reunion, open to any Hutch transplant patient five years or more post-transplant, is an event unique to the cancer center, whose physician-researchers pioneered a lifesaving procedure that has since led to more than 1.5 million transplants around the world for people with leukemia and other blood disorders. Every five years, former patients from around the country — and the world — gather in Seattle with their families to commemorate survival and the science that saved them.
Saturday’s event was Smith’s first return to Seattle since his transplant in 1990, the same year Hutch founding faculty member Dr. E. Donnall Thomas received the Nobel Prize in physiology or medicine for developing the procedure.
Diagnosed with acute myeloid leukemia, or AML, at the age of 36, Smith’s tumultuous search for a cure was national news in 1989 with newspapers, magazines and even a television show covering his appeals for a bone marrow donor, the discovery of a 100% match and that person’s eventual decision not to donate.
ABC’s “The Home Show” and their camera crew even followed Smith through the autologous transplant — a transplant that used his own blood stem cells, rather than a donor’s — that he eventually underwent.
“An autologous transplant had a much lesser chance of survival than if I had a donor, but it was my only chance,” said Smith in a phone interview before the event. “My own bone marrow, which was harvested while in remission, was treated with high-dose chemotherapy and then infused. I was literally rescued by my own bone marrow.”
Smith said his doctors weren’t certain the transplant alone would give him long-term survival, so they advised him to undergo an experimental treatment with interferon weeks after his transplant.
“It was a 10-day process and was more grueling than the transplant, but it worked,” he said.
Eventually, he returned home to California, where he had to rebuild his law firm, along with the muscle and weight he’d lost to illness. But the transplant and follow-up treatment were successful; his leukemia was completely gone.
“When I came back from Seattle, I had to get my weight back, go to the gym, work out, and I still I do that now,” he said. “And I have not had a serious health problem since then. I got my life back.”
Hundreds of thousands of others have also regained their lives since bone marrow and blood stem cell transplants were shown to cure certain types of blood cancer by replacing the patient’s immune system with that of a healthy (related or unrelated) donor.
“When I first came to Fred Hutch, there were very few transplants being performed,” said Dr. Fred Appelbaum, holder of the Metcalfe Family/Frederick Appelbaum Endowed Chair in Cancer Research, in his introduction to a dozen virtual workshops held throughout the day. “Today, over 100,000 bone marrow transplants are performed annually worldwide.”
Appelbaum shared some of the tremendous progress Hutch scientists have made over the years in making transplants safer and less prone to complications or long-term side effects like graft-vs.-host-disease, a common result of transplants where the immune system that arises from the transplanted blood stem cells mistakenly “fights” the patient’s own tissues.
“Forty-five years ago, we could only do transplants for about a third of our patients,” Appelbaum said. “Now, we can find a donor for just about everyone who needs a transplant. We have 40 million people typed and entered into donor registries. We’ve developed regimens for older patients. And we’ve remarkably reduced the risks posed to our patients by infections.”
The online workshops — led by Hutch hematologists, oncologists, infectious disease experts, nutritionists and others — covered everything from cognitive issues brought on by treatment; to scientific findings from the Hutch’s Long-Term Follow-Up program; to healthy eating and exercise; and to the use of alternative treatments like cannabis.
Most attendees were there to celebrate their reclaimed lives, which they did at festive outdoor tables replete with food, drink, family, friends and memories. Beaming patients hugged doctors and nurses not seen in years amid tears and laughter, while grandchildren some assumed they’d never meet munched on corn dog bites and chased after balloons.
Fred Hutch President and Director Dr. Thomas J. Lynch Jr. , observing the nearly 250 patients and family members gathered in the Hutch’s Mundie Courtyard, called the in-person reunion, postponed by the pandemic for two years, a “celebration of survival” and an “absolutely spectacular event that I could totally get used to.”
Lynch went on to outline recent events at the Hutch — from the opening of the Steam Plant, “a terrific facility for innovation;” to a soon-to-be-released book on the history of bone marrow transplantation by Appelbaum; to the Hutch’s recent merger with Seattle Cancer Care Alliance to provide a more seamless translational research and clinical care experience for patients.
Physician-scientist Dr. Stephanie Lee, holder of the David and Patricia Giuliani/Oliver Press Endowed Chair in Cancer Research, took the stage to honor the longtime medical director of the Long-Term Follow-Up Program, Dr. Mary Flowers, sharing news of Flowers’ impending retirement later this year. This prompted an appreciative standing ovation from the crowd.
The diminutive Flowers, whom Lee referred to as “small but mighty,” spoke of the giants of the transplant program with whom she worked, Thomas and Dr. John Hansen, as well as the many others who’ve helped patients over the years.
“Fred Hutch started with the idea that you could cure cancer with a bone marrow transplant,” she said. “And I have been blessed to have known the founder of this idea — Dr. Thomas, my first attending physician when I started. His legacy continues not only here in this country but all over the world.”
“It truly takes a village,” she said. “And this is a celebration of our village.”
Flowers also took a moment to introduce pediatric transplant survivor Dr. Juliana Lanza Neves, whom she treated 30 years ago. A native of Brazil, as is Flowers, Neves now works as a pediatric oncologist at a cancer center in her home country. She attended the reunion with her father, who was her bone marrow donor, and with her husband.
“In Brazil, I am a doctor,” she said in an interview before the event. “But in Seattle, I am a survivor. This moment is very important to me.”
Keynote speaker Smith, who attended with his wife, their three sons and several grandchildren, also talked of how important the moment was for him and the rest of the survivors in attendance.
2022 BLOOD AND MARROW TRANSPLANT REUNION VIRTUAL WORKSHOPS
Welcome message and opening remarks
with Drs. Nancy Davidson and Fred Appelbaum
Where Are My Keys? What Was Your Name Again?
Thinking & Concentration Post-Transplant
with Dr. Myron Goldberg
What To Do? Will GVHD Ever Go Away?
Chronic Graft-vs.-Host Disease (GVHD)
with Dr. Mary Flowers and Kristin Geary, ARNP
COVID-19 & Vaccines
with Dr. Jim Boonyaratanakornkit
The Importance of Your Immune System to Staying Healthy
Infectious Diseases & Vaccines, including COVID-19
with Dr. Paul Carpenter
It’s Not Over When You Go Home: Kids
Coping with Post-Transplant Issues (Pediatric)
with Drs. K. Scott Baker and Neel Bhatt
Get Moving to Improve Your Health
Exercise, Physical & Heart Health
with Drs. Hanna Oh and Tyler Ketterl
Healthy Eating to Sustain an Active Lifestyle
with Paula Macris, MS, RD, CSO, CD, FAND
It’s Not Over When You Go Home: Adults
Coping with Post-Transplant Issues (Adults)
with Denae Davis, RN, BMTCN and Jen Lynch, BSN, RN, BMTCN
What Is Known About Alternative Treatments? Will They Help?
Complementary Therapies, Including Cannabis
with Dr. Steve Pergam
Survivor Mental Health
with Dr. Ty Lostutter
with Dr. Geoff Hill
“We’re here today because of the Hutch, because of people like Dr. Flowers and because of the many great doctors and nurses and staff members,” Smith said. “I didn’t even know what leukemia was when I was diagnosed. But I was an avid baseball fan and I knew who Fred Hutchinson was. And I was intrigued by what the doctors here were doing for patients like me.”
Smith then quoted an old baseball adage usually attributed to the Brooklyn Dodgers’ general manager Branch Rickey.
“Luck is the residue of design,” Smith said. “In other words, we did not survive by luck. The Hutch is the architect of the design that got us through this. I can never repay the debt I owe to the Hutch for saving my life.”
After speeches, Lynch took the stage again to honor the patients, donors and caregivers in attendance, calling for those who’d survived more than five, 10, 15, 20, 25, 30 and 35 years post-transplant to stand up and be recognized. As patients stood and the crowd enthusiastically applauded, Lynch asked a few patients to share their cancer stories.
He also honored the bone marrow recipient in attendance who’d survived the longest: Linda Krebsbach, 73, who traveled to Seattle from Wisconsin for her original transplant in the 1980s and again to celebrate with fellow survivors this weekend. Krebsbach, who was transplanted in her early 30s, was there to mark 41 extra years of life after a bone marrow transplant cured her of AML.
Lynch ended the program with a story about his father, also a physician, who was the person who first told him about the experimental procedures going on in the Pacific Northwest.
“When I was a little kid playing in the yard outside my father’s office, I would see young patients my age going in to see him,” he said. “And I remember asking him later, ‘What can you do for them?’ He told me at the time he couldn’t do much but said there was a place in Seattle called Fred Hutch. ‘They’re an incredible place and they’re doing some different things,’ he told me. ‘I don’t know if it will work but it could give some of these people a chance.’”
Years later, patients are still coming to the Hutch — and to cancer treatment centers around the world — for a second chance at life after leukemia and other blood disorders.
Gary Hayden, a survivor from Spokane, said he still remembers the words of the doctor who handled his intake when he was first admitted to the Hutch for his transplant more than 20 years ago.
“I remember he put his arm around me as we walked down the hall and said, ‘We don’t treat cancer here, Gary. We cure it.’ That just stuck with me all these years.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at email@example.com. Just diagnosed and need information and resources? Check out our patient treatment and support page.
On April 1, 2022, Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance became Fred Hutchinson Cancer Center, a single, independent, nonprofit organization that is also a clinically integrated part of UW Medicine and UW Medicine’s cancer program. Read more about the restructure.
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