CENTER NEWS - THURS., AUGUST 17, 2000

NEWS & FEATURES

`Here are all these people working to keep me alive' A CELEBRATION of life at Safeco Field brings smiles to the faces of (from left) former Hutch patient Egmidio Ong and his wife Linda of the Phillippines and former patient Philip Scharnberg-Peters of Germany, along with 400 other patients, their family members and Center faculty and staff. The Safeco Field event held Saturday, Aug. 5, closed the three-day Spirit of Seattle 2000 patient reunion. Ong, transplanted in 1991, has set up a bone-marrow transplantation foundation for indigent patients in his country and brought "Spirit of Seattle 2000" shirts to share with fellow patients at the reunion. Scharnberg-Peters, 17, transplanted in the same year, drew two standing ovations from the opening-night crowd of 720 at the University of Washington HUB Ballroom with stunning renditions of Rachmaninoff and other classical pieces on the piano. - Photo by Theresa Naujack A reunion of courage, gratitude, humor By Barbara Brachtl, Brad Broberg and Clay Eals Trials and triumphs of survival shone from countless faces earlier this month in Seattle.      From 171 former Hutchinson Center transplantation patients, from 550 family members who had cared for them, from dozens of Hutch faculty and staff who had treated them, and from a stageful of actors who chronicled their journey from everyone involved in the Aug. 3-5 Spirit of Seattle Reunion came joy, tears and the warmth of a common bond.      And humor. Don't forget the humor.      "Someone asked me why we were having this reunion," the Center's Nobel laureate, Dr. E. Donnall Thomas, told the crowd attending the opening ceremony dinner at the University of Washington HUB Ballroom. "I said, `Well, high school classes have reunions, but this is a little more significant. It's a kind of a club a very expensive club to join, in dollars, time away from home, emotional trauma, pain. And you wouldn't want to tell anyone about the initiation." Additional photos of the reunion are available for viewing at http://www.mgkramer.com      The reunion of former Hutch patients was the third in 12 years (the first two were held in 1988 and 1994) for those at least five years post-transplant.      Some attendees knew each other from their transplant experience years back and eagerly renewed acquaintances. Some who came were related to patients who didn't survive treatment but went on to increase the bank of marrow donors.      The patients and their family members husbands, wives, children and grandchildren came from as far away as the Eastern Hemisphere and from as nearby as the neighborhoods of Seattle.      From Mill Creek came DeAnne Meling, transplanted in 1990, who considered the reunion "sort of a milestone I was eligible to attend."      While she enjoyed the informational seminars, Meling also sought out the camaraderie of shared experience.      "My family is great, but it's nice to be with other people who've gone through it, too," she said. "I was curious to see who would be here. I met a woman who was 20 years out, and that was inspiring. Just being able to see that we're all here Fred Hutchinson has done wonderful things."      As with her fellow former patients, Meling found the transplant experience life-changing. At the time of her transplant, she was 25 and in sales. Emerging from treatment at the Hutch, however, she shifted gears. "I felt like I was treated so well that I wanted to be in the medical field," said Meling, who now works for Providence Hospital in Everett.      From Hutchinson, Kan., came Brenda Leslie, who found her reunion-related tour of the Day Campus a moving experience. "I thought, `Here are all these people working to keep me alive,' " she said.      Here's a rundown of the reunion's high points: Opening ceremony dinner, Aug. 3      Janet Nims      Nims, a former longtime Hutch nurse, noted that the hundreds of large      and small paper cranes on the HUB Ballroom tables were a symbol for long life, hope, good fortune and peace.      She asked the former patients to write their names and short messages on the underside of the wings of the small cranes and to place them in a box by the door as they left. The cranes will be strung and will hang in the Thomas Building and possibly the Pete Gross House.      Dr. Fred Appelbaum      The director of the Hutch Clinical Research Division and of the Seattle      Cancer Care Alliance spoke of massive growth in patient-care facilities during his 23 years at the Hutch. Dr. E. Donnall Thomas and his wife and research partner Dottie enjoy their box lunches at the closing ceremony at Safeco Field. -- Photo by Theresa Naujack        When he joined the Hutch, transplants could be performed only with identical twins or matched siblings, which meant fewer than one in three patients who would have benefited from a transplant could have one. With new techniques pioneered over the years, he said, it's now possible to use unrelated donors, so transplantation has become an option for the majority of patients who would benefit.      He noted that the range of disease for which transplantation is effective treatment has broadened and that the Center has found ways to reduce the toxicity of the regimen and prevent life-threatening infectious complications. Much knowledge remains to be refined, he said. "We still have a long way to go," he said. "Thank you for being our partners in this fight."      Dr. E. Donnall Thomas      As he walked to the podium, Thomas, who won a Nobel Prize in 1990      for pioneering bone-marrow transplantation as the state-of-the-art cancer treatment, received a standing ovation, and one following his talk.      He noted that without the participation of Hutch research patients and their families, doctors would know comparatively little about cancer treatment: "Your courage and your fortitude provided the knowledge that led us forward and will help patients in the future. If I were handing out the Congressional Medal of Honor, each of you would be wearing a medal."      Dr. Robert Day      Day, who served as president and director of the Hutch from 1981      through 1997, paid tribute to those who gathered for the reunion.      "It's you, the former patients, and the Seattle team (of physician/researchers) that did something that rarely happens in medicine," Day said. "You established a whole new method of treatment."      Dr. Paul Martin      Martin, director of Long-term Follow-up and a Hutch physician since      1977, noted that the questionnaire sent periodically to former patients has been enhanced, meaning that it will take 15-20 minutes to fill out instead of the former three or four minutes. Answers to the questionnaire, however, will yield much more information about preventing and treating the complications of transplant. Nurses, played by Dr. Karen Peterson (left) and Heather Cabal of the Hutch, unfurl a fresh bedsheet, while Hope, played by Frannie Rudolf, 11, frolics beneath it, during the one-time-only presentation of "Legacy" on August 4. --Photo by Clay Eals        He also spoke of the dilemma of what to call former transplant patients. "Patient" isn't a good term, he said, because "we understand how people want to move on with their lives." "Survivor," he said, seems to imply that survival "is not the expected result of our treatment." The term "veteran" has been considered, but it doesn't have the luster it once did. So Long-term Follow-up is still searching for an appropriate label, he said.      Dr. Lee Hartwell      "You really are the heritage of the Hutch," the Center president and      director told patients and families.      "Bone marrow transplantation has given us enormous insights into the role of our own immune system in fighting cancer," he said.      A similarly valuable direction for research, Hartwell said, is genomics, which is "important to cancer research because cancer is a disease partly due to changes in our genes. We can catalog genetic changes that occur in a cancer cell. We will build on the `unity of biology,' an insight of the last 10 years that we're all built of the same parts. Yeast, fruit flies, worms, Zebra fish all have the same genes, closely related to those in humans. We will also build on the experience and success of the Clinical Research Division in taking fundamental science and bringing it to treatment."      Laura Landro      he Wall Street Journal editor and former Hutch patient settled on      "veteran" as the most appropriate label for former patients. "'Veteran' is how I think of us a big VFW meeting," she said. "We were all in the same war together. We all had our own experiences, but we were fighting for the same thing."      Landro said she and her family came to think of Mount Rainier as a symbol of survival. When they flew to Seattle, they would start thinking, "Will I see the mountain?" "Every time," she said, "I've seen the mountain. When I flew into Seattle this time (for the reunion) there was not a cloud in the sky it's clear sailing."   Legacy,' Aug. 4      The play, whose subtitle was "Stories from the Heart of the Hutch" and      which chronicled more than three decades of Hutch bone-marrow transplantation research, went off without a hitch at UW Meany Theatre.      A 17-member production team, including seven Hutch faculty and staff, performed a script derived solely from words spoken in interviews with more than 50 faculty, staff and patients conducted over the past year by consultant and performance artist Peter Donaldson.      The performance drew accolades immediately afterward and into the following week. "This is a very special night," said Dr. Lee Hartwell, Center president and director who commissioned the project. "You have allowed all of us to experience the clinical transplantation story through art and theatre," he told the 300 people present. "It's the most complete experience I've had of what you all have been through."      Winona Hauge, Center social worker, offered congratulations via e-mail. The play "was a true revelation and a fine work of art," she wrote. "I know I am not the only one who witnessed the caterpillars of our stories turn into the butterflies. What a metamorphosis!" Closing ceremony luncheon, Aug. 5      Bright blue skies, very warm temperatures, sprinklers shooting water all      over the baseball diamond greeted the 400 who attended. Virtually everyone wore white, "Spirit of Seattle 2000" T-shirts, which showed to good advantage when the group posed with Dr. E. Donnall and Dottie Thomas for the traditional reunion group photo.      Karen Moyer      Following a videotaped      message from her husband, Seattle Mariners pitcher Jamie Moyer, Karen recalled that their involvement with the Hutch began in 1993 when Jamie was pitching for Baltimore and they visited a young leukemia patient named Gregory Chaya.      "It dawned on my husband and I how much he looked like our own 2-year-old," Karen said.      When Gregory relapsed that Christmas, his family found the Hutch and he came to Seattle for a second transplant. Gregory is now 10 and is in his sixth post-transplant year. "With that story, we've created a tremendous passion for the Hutch," Karen said.      Steven McCarty      The former Hutch patient noted that three days earlier he      had celebrated the 29 th anniversary of his transplant: "Rarely does a day go by that I don't give thanks in some way for being able to see another sunrise and sunset."      As one of the transplant program's first patients, he noted that the early days were difficult. But he also recalled afternoon Hutch pizza parties at which he was allowed to drink beer because "it was good for my platelets."      Jill Lacefield      "We transplant survivors certainly know what it      means to get a life." She said Aug. 4, 1995, at 10:15 a.m. the day her stem cells were poured back into her body was the day "I got a life."      The former Hutch patient compared life in the hospital to an extreme sport. "People get excited about the strangest things, like 20 white cells."      Percy Randle      "If I had a dollar for every hug and a kiss I've received      in the last three days. I could retire in style," said Randle, former Hutch patient and longtime director of pastoral care, who came to the reunion from Mississippi.      He reflected on patients who died. "I have certainly felt their presence since I've been here, strongly, through all of you." He also talked about how he often feels survivor's guilt. "They fought just as hard as I did, they had just as much faith, or more, and they still didn't make it," he said.      He said the best way to honor them is "to continue to live. Many of them died for us, and when we live, they did not die in vain. We are the hope for everyone who is facing cancer, or will face cancer, because we are the survivors. When our friends on the other side look at us, they say, `What a legacy we left behind.' A legacy of hope."      Dr. E. Donnall Thomas      Thomas doffed his hat and said, "I'm exhibit A for the      fact you can live very quality life with no hair."      Thomas said that when he and his wife and research partner Dottie see so many patients looking so good, "I can't begin to express how we feel."      The Total Experience Gospel Choir made a strong attempt, however, with a performance that included the inspirational song, "I Can Fly."