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Stories of Courage & Hope Abstracts by Tom Swartz
In this issue:
Surviving Cancer Gives Father A New Outlook You've heard people talk about icing on the cake. For Mike and Laura Lopata who recently celebrated their 30th wedding anniversary will mark a different wedding -- call this the story of icing on a wedding cake. The year was 1994. Mike Lopata had struggled for nearly 18 months with progressively worsening back pain. A series of doctors failed to find an answer, and Lopata was gritting it out and living on pain medication. Frustrated, he started over. A general practitioner ordered an MRI. It showed something on his spine. That something turned out to be a tumor, not the cyst an earlier doctor diagnosed. Lopata had Ewing's sarcoma. His tumor had grown to the size of a grapefruit. Their twin boys, Michael and David, then 10, were aspiring big league ballplayers. "Don't make me sit in a major league park and watch our kids play ball by myself," Laura Lopata remembers tearfully telling the man she fell for in college. But for Mike Lopata, the diagnosis brought a sense of relief. You can't fix what you can't diagnose, he says. And so, it began. He remembers the day he started treatment. Prepped for surgery to install a port that would be used to administer chemotherapy, he said goodbye to Laura and was wheeled to surgery. Alone, the enormousness of what lay ahead settled in. He was shaking. Over the next nine months, he was in and out of the hospital as he underwent chemo, then radiation, then more chemo. One day in the driveway of the family's home, he assembled a hockey net for the boys, carefully securing it with extra ties. "As a rule, Ewing's sarcoma patients did not fare really well 13 years ago," he says. "I figured that net would survive even if I didn't and someday in the future they might remember how I put the net together for them." The net is long gone. The boys, who turn 24 in November, have traded in their baseball dreams for other ones. David Lopata finished college and is working on a career as a financial planner. And Saturday, Michael Lopata, who is training to be a chef, will marry Amy Klein, a teacher, in Coeur d'Alene, Idaho. "Thirteen years ago, I don't know that I even thought about our sons' weddings," Laura Lopata says. "But I never forgot how lucky we all are to still have Mike here." Nor has Mike Lopata, a man who describes himself as "a driven person always charging forward." Those qualities are useful in some situations. But sometimes, he says, they can keep you from "stopping and smelling the roses." Which is something that the man, both logical and determined, has gotten good at, post cancer. Watching children baldheaded from chemo on a TV program can reduce him to tears. So can movies about people battling cancer. It's not that he feels sorry for what he went through, he says. It's sorrow for what the patients and their families are enduring. "Because of what my family and I went through, I am able to find pleasure -- and sometimes pain -- in things that previously would never have affected me," he says. "Sometimes it's the smallest things that have the greatest impact." Among them is a San Jose Sharks jersey a friend sent to the hockey enthusiast at Christmas when he was sick. There's also a plate of chocolate chip cookies a friend of Laura's delivered to the hospital when he was undergoing chemo, the extra ties on a hockey net and living long enough to see a son wed. He says there was a time when his "best-case scenario" was to see the boys through high school, long enough to teach and nurture them, preparing them for life. "When I bartered my future and made my deal with God, that's what I asked for -- just to see them graduate." Every day since has been a bonus, he says.
Sarcoma Couple Weds Fulfilling Sarcoma Patient's Last Wish Hannah Ciobo, 19, achieved her final wish when she married her "soul mate" just three hours before her death from sarcoma. Hannah lost a three-year fight against synovial sarcoma on October 2nd. Her fiancé Tom O'Driscoll, 20, is a Ewing’s sarcoma patient. The couple were so determined not to let death interfere with their love story that Tom organized for a Catholic priest to marry them at the hospital at 10.15pm the day before her death. Tracey Wickham, Hannah’s mother, said she was comforted that Hannah had got her dying wish. "She knew what was going on, she gazed into his eyes and the love they had for each other was incredible. Tom is the most special person ... they were meant to meet. They were meant to get cancer and they were meant to meet because he was her soul mate and vice versa. The year they had together was so beautiful." Hannah died with her family and friends around her three hours after the bedside ceremony. Her funeral service would also mark her marriage. "We are going treat it as a wedding," Wickham said. "She's going to be buried in her wedding dress and there will be six bridesmaids and groomsmen, including my son. Their little dog is going to be carrying the rings up in the chapel." Wickham said despite her daughter having been in a hospital gown and on oxygen she "was aware" of the ceremony, which was attended by 20 family members and friends including Hannah's father and brother Daniel. "It was obvious she wasn't going to make it - that was her wish to be married. Tom suggested it and she agreed," she said. "There was love in her eyes (during the ceremony). Tom was alone with her and he saw her slip away.” Hannah and Tom's relationship had the hallmarks of a fairytale romance. They first met while both were in hospital receiving cancer treatment in September 2005. Romance blossomed at the end of last year when both were cleared of cancer, but Hannah's reprieve from the disease did not last long. She was diagnosed for the fourth time in June this year, with an inoperable tumor pressing on her right lung. Two weeks later Tom proposed as the pair launched a united battle to overcome her latest diagnosis. Hannah had already courageously beaten cancer three times. She was first diagnosed in October, 2004, with synovial sarcoma but beat it after several operations, chemotherapy and radiation treatment. Yet the cancer returned on two more occasions. Tom was diagnosed in 2005 with Ewing's sarcoma but was cleared last year. Wickham described her daughter - whose paintings proudly hang on the walls of the family home - as her "teacher". "I learned a lot from her. Everyone has taken her death very hard," Wickham said. In an interview, Tom described Hannah as "the most inspirational, the most colorful and the most beautiful person I'm ever going to meet. I'm absolutely blessed having her in my life. She makes my world so bright," he said.
4-Year-Old, Clear of Cancer, to Visit Disney World Joe Delisle stood in the backyard of his Amesbury, Massachusetts home last week pushing his 4-year-old daughter, Alana, on a swing set as he spoke of her bout with cancer. She was diagnosed with Ewing’s sarcoma in June 2006 and immediately began chemotherapy treatments that would continue every three weeks for a year. The cancer developed in her tibia, the large bone in the lower leg, causing an otherwise active child to crawl rather than walk in the days leading up to the diagnosis. The initial news devastated Joe and his college-sweetheart wife, Melissa Delisle. “You’re a parent,” Melissa said. “You don’t have a choice. You deal with it because you do whatever you can to make sure your kid lives.” The 12 months of chemotherapy included many bad days — ones that left Alana depleted on a bed at Massachusetts General Hospital. Eventually Alana’s tibia had to be removed and replaced with a bone from a cadaver. “Stop talking about my leg!” Alana screamed once her father got to the word, “cadaver.” Less than two months since Alana was given a diagnosis that was 100 percent clear of cancer for the first time in a year, she has no patience for a recounting of the bad times. Good times figure to be in the immediate future. Joe, Melissa, Alana and youngest sibling, Ella, 2, will depart for Disney World on Oct. 25 thanks to a $7,500 donation from the UMass Lowell athletic department through Make-A-Wish. It was a fitting gesture, since both Joe and Melissa graduated from UMass Lowell in 1998, Joe as a linebacker on the football team, Melissa as a two-sport athlete in soccer and softball. Melissa’s college roommate, Shannon Hlebichuck, who is now the varsity field hockey coach at the school, spearheaded the effort to send the Delisles to Disney World. “A year of Alana’s life has been taken away,” Hlebichuck said. “I have a child the same age. We wanted to make up for what she missed out on.” Whether it was a mother’s intuition or a downside of her occupation, Melissa was the first to mention cancer in June of 2006. As a nurse who specializes in treating cancer patients at MGH, she had seen the symptoms and pained looks that Alana showed the summer before last. After Melissa initially took her daughter to a local pediatrician and he diagnosed the ailment as a possible bone fracture, she sought a second opinion. When an MRI had doctors believing Alana’s ailment was a bone infection, Melissa asked for a biopsy. Finally a cancer test came back positive, and Melissa’s worst fears were validated. “Alana obviously benefited from me being an oncology nurse,” Melissa said. “But after going through this experience, I wish I wasn’t one. Knowing she’s not in the clear is not fun personally. I struggle with that. I always wonder, ‘Should I get a different kind of job?’” But the struggle is never evident to Melissa’s friends or family. “For the sake of Alana, she keeps everything on the inside,” Hlebichuck said. “She needed to be strong on the outside for her daughter. That’s what she did.” So the Delisles treated every therapy treatment like a trip to Disney World. Alana would march into Mass General dressed like a princess, only with an evident limp and a bald head. The positive energy worked in cycles. Joe and Melissa fueled Alana and she returned the favor. “I remember her being so sick and tired in the hospital — worn down from the treatments,” Melissa said. “But she’d pack all different dresses and get into character. It helped all of us. It gave us a light at the end of the tunnel.” After the surgery to replace her tibia, Alana was fitted with a leg cast that ran from hip to ankle. Months later, her leg strengthened so doctors fitted her with a removable lower leg cast to wear at home and a smaller shin guard to wear to school. As Alana ran through her backyard in the removable cast, she would bounce on her right foot for two steps and swing the braced left leg around every third step. She didn’t appear to be overly cautious as a result of the surgery; instead, she raced up and down a grassy hill and laughed whenever she fell. “That’s how we knew she was sick,” Joe said. “She stopped wanting to play soccer and kick the ball. She stopped wanting to run around. She wanted to be carried everywhere, even on our trampoline. That wasn’t like her.” Alana’s first stop in Disney World will be the Bippity Boppity Boutique. There, she will be fitted for dresses and prepared like a princess. “I can dress up like any princess I want,” Alana said. “They’ll do my hair, but it won’t take long for me,” referring to her hair that’s just starting to grow in again. Upon her return, she will have her first routine checkup since the cancer-free diagnosis. It will be part of a two-year plan in which she receives a chest CAT scan every three months. After two years, the checkups will occur twice a year. But Alana would prefer to talk about Disney World or the prospect of attending kindergarten next fall. Cancer talk is off-limits. “I like not being in the hospital,” Alana said. “I didn’t like that. But I like being a princess.” “Her understanding of the severity of this whole thing — I don’t think she gets it,” Melissa said. “She knows she was sick. She knows about the doctors taking her blood and the chemo. But I don’t think she understands how sick or how lucky she was. Her age is a blessing.”
Art Student Wins $20,000 Smithsonian Exhibit Cancer may have claimed the use of Jacolby Satterwhite’s right arm, but it left something in its wake — a drive to create. As the grand prizewinner of the juried competition Driven, Satterwhite recently won $20,000 and a priceless opportunity to show his work at the Smithsonian Institution’s S. Dillon Ripley Center. To paint, the senior at Maryland Institute College of Art holds his right arm with his left arm, he explained. “I can move my hand, but can’t move parts of my arm.” He cried when he learned he won Driven. “It happened the week my grandmother died. It must have been her. I’ve had recognition, but not like this.” Jurors selected Satterwhite’s oil on canvas, “Remission & Resilience,” from 200 hopefuls. The brightly colored narrative is on display beside works from 14 other artists with disabilities. At age 11, doctors told Satterwhite he had osteogenic sarcoma and would lose the use of his arm. He continued to draw to keep his mind off his diagnosis. “But I didn’t think I would be a painter [after the surgery,]” he said. “I thought my work wouldn’t be as tight and refined.” Cancer struck Satterwhite for the second time when he was 17, claiming part of his lung. Satterwhite’s decision to create large-scale paintings proves his ambitious nature, said Soula Antoniou, president of VSA arts, the nonprofit organization presenting the exhibit with Volkswagen of America. “When you see Jacolby’s work, you realize just how talented he is, and how complex and compelling his work is,” Antoniou said.
Five-year-old gets titanium femur Five-year-old Angeline Thompson is one of a kind. Diagnosed with Ewing's sarcoma, she is the first patient to receive an expandable titanium femur at Health Park Medical Center in Fort Meyers, Florida. She had the surgery on Aug. 3, some four months after her mother, Kim Thompson, took her to Cape Coral Hospital's emergency room for what she thought was a pulled muscle. But instead of a pulled muscle, doctors told Thompson that her daughter had a fracture in her left femur and cancer. Angeline's surgery was the sixth time the procedure had been performed in the United States and the 53rd time worldwide. "They salvaged the lower third of her femur," said Thompson, 36. "As a result, they were able to salvage about 80 percent of her growth rate. The titanium femur only has to make up for 20 percent." Once a year, the Thompsons will drive to Tampa's H. Lee Moffitt Cancer Center and Research Institute, where electromagnetic waves will lengthen the femur at a rate of 1 millimeter every four minutes. The center houses the only magnet in the country that can be used for the procedure. When Angeline was first diagnosed, her mother worried about how she would handle losing her long, blonde hair to chemotherapy. "I had to explain to her what (Ewing's sarcoma) was," said Thompson. "Probably the hardest part to explain was that she was going to lose her hair. She's a girly girl. But, she combed it out herself and we are keeping it in a bucket." Angeline, who has been collecting angels since her diagnosis, has taken the entire procedure in stride, though. "She moves her own legs. She gets herself out of bed," said Thompson. "She is not the type of person who accepts help for something that she can do herself, even if it causes her pain." Angeline will undergo chemotherapy for another eight months.
A mile off the coast, south of Newport Beach, California Brad Thomas came across company. Alone on his paddleboard, he was heading north from Laguna – not just to get somewhere, not just for exercise. Paddling on the ocean took him away from the stresses of his life on the mainland. The doctors' offices. The surgeries. A loved one in pain. In the blue water outside Crystal Cove, the 39-year-old Laguna Beach resident spotted the shapes of three paddleboarders coming south. Mark Schulein, 38, was one of them. The Newport resident has been paddling since 1996. He was surprised to see a paddler he hadn't met so close to home. So, Schulein and his friends veered toward Thomas, and Thomas veered towards them. They stopped and introduced themselves. Then, Thomas noticed something on Schulein's paddleboard. "Hey, what does that 'O2H' sticker mean?" Thomas asked. Schulein told him the sticker stood for "Ocean of Hope," the paddleboarder organization that helps victims of sarcoma. Thomas's jaw dropped. "Oh my gosh," he said later. "That's what I'd call fate." Thomas' wife. Jennifer was diagnosed with sarcoma in 2005. Brad, an orthopedic surgeon, knew they'd have to act fast. Within weeks, Jennifer underwent surgery on her wrist. Then, the radiation treatment began: six weeks of "the worst sunburn" being cooked onto her arm every day. After a year of battling, the treatments appeared to have been successful. But when Brad paddled up to Schulein a mile off the Newport Beach coast, Jennifer was still recovering – and the prospect of a recurrence loomed. That's where Brad found out about Ocean of Hope. "Oh my gosh, my wife – we just went through sarcoma," he told Schulein in the water. A few months later, Thomas was on the Ocean of Hope team at the Catalina Classic. He had participated in the same race a year before, but now it had more meaning. "She's such a captivating and beautiful woman," he said of his wife. "It brought her into my community." The race is always hard – it can take up to 10 hours to finish. And anytime Thomas considers giving up, the thought of his wife keeps him strong. Thomas says the challenge is part of the appeal. Out on the water for more than six hours, under the hot sun, with waves slapping him in the face and dozens of miles to cross, he knows anything can happen. A second wind could come from anywhere. "Sometimes I see whales, sometimes I see sharks," he said. "If you spend enough time in the ocean, sometimes you'll find a new life out there."
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