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Stories of Courage & Hope
by Tom Swartz
Amputee on Cross-Canada, Two-Wheel Journey of Hope Inspired by his hero’s, Terry Fox and Lance Armstrong, a Toronto man has just finished the first leg of a cross-country journey by bike. "Riding across Canada is something I always wanted to do because it’s such a big country it is a great challenge for myself," said cyclist David Visschedyk. At just 8-years-old Visschedyk had his right leg amputated after being diagnosed with osteogenic sarcoma, now he is pedaling across Canada to raise funds and create awareness for a cancer not his own - the James Fund for Neuroblastoma Research. "James (Birrell) and I went to the same camps and I had known people that knew him. James died when he was just 8-years-old from neuroblastoma. “I picked this organization because I really liked what they are doing with the money and it is a charity that all the money goes to research for a type of cancer that only affects children," said Visschedyk. Visschedyk and his friend, fellow cancer survivor Timothy Knowles, dipped the bike wheel in the Pacific Ocean on the shores of Vancouver and expect to complete the ceremony in the Atlantic Ocean on the shores of Halifax by the end of August. Peddling six hours a day or 132 kilometers will get the rider to his goal of 6,900 km across the country while showing those with cancer to dream big and never give up. To donate, Visschedyk said many people are logging onto his website to not only follow him by reading his journal but by clicking the donate online button. In other cases people have been stopping and giving them checks or have been purchasing the book authored by James Birell’s father, Cye Birrell, called ‘Ya cant let cancer ruin your day’, available at Home Hardware. Also available for purchase are commemorative metal dog tags. The cyclist encourages people to log onto his website, pass the word onto friends and to email him as they follow his journey. "People have been emailing me and a couple of kids I had met with neuroblastoma along the way have sent me a few emails saying they are happy I am trying to help them out and they give me encouragement to keep fighting and to keep going." The rider is not looking for fame, just to help out kids that had to go through a similar experience. So far 922 kilometers have been logged as the duo landed in Lake Louise on July 10, steadying to move onto Banff pass through Calgary and onto Drumheller. "It has been great, we pretty much finished all the mountain stages which are pretty darn tall and the rain was a nice change from 40 degree weather," said Visschedyk of his ride so far. "It is just such a beautiful country and it is great to see it all in slow motion as you do on a bike."
Osteosarcoma Survivors Swim for Cancer Screenings Kyle and Cindy Underwood plan to go for a bit of a swim August 13th. The North Canton, Ohio couple, both of whom lost a leg to osteosarcoma, will swim in a four-person team of amputees in a 25-kilometer journey (15.5 miles) across Long Island Sound. The Underwoods are part of Team Hanger, the only amputee team taking part in the Swim Across the Sound, an event to raise money for cancer screening and for cancer survivors and their families. Kyle Underwood, 43, is a prosthetist for Hanger Orthopedic Group. He met his future wife, Cindy, 47, in 2003, when he was fitting her for a prosthetic leg. This will be the second year the couple have participated in the swim. Both Kyle and Cindy developed osteosarcoma in their youth. Kyle was 12 when he was diagnosed, and Cindy was 14 when she was diagnosed. Kyle lost his right leg, and Cindy lost her left leg. On August 5th, the Underwoods and the other two members of their team expect to begin the swim from Port Jefferson, Long Island, N.Y., to Bridgeport, Conn., at about 8:30 a.m. The other two swimmers on Team Hanger are David Prince, 22, of Atlanta, who lost a leg below the knee in a motorcycle accident in 2002; and Mark Rowley, 54, of Mesa, Ariz., who lost a leg to cancer in 1977. Theirs will be the only amputee team among 25 teams and 13 solo swimmers participating in the event. Each swimmer will do 30 minutes at a time, followed by 90 minutes of rest. Each will swim about four miles during the event. Last year, it took about nine hours to complete the entire swim with six swimmers participating, Cindy Underwood said. Cindy, a second-grade teacher at Clearmount Elementary in the North Canton school district, said the couple will do the basic crawl stroke at the fundraiser. “You get in the groove'' of a long swim a few minutes into it, she said. Kyle Underwood said cancer detection through screening is an essential part of helping to save lives. “Early detection is the best policy for cancer,'' he said. The Swim Across the Sound, part of St. Vincent's Medical Center in Bridgeport, Conn., was started in 1987, when $5,000 was raised. In 2004, more than $2.5 million was raised to help 18,000 people. The Underwoods have raised $2,600 themselves and Team Hanger hopes to raise $10,000.
Motorcyclists Revved Up To Help Family Between the racket of the engines and the tunes from the band, 7-year-old Christopher Arens whispered “yes” and nodded when asked if he was having fun. He then ran back to the game of chance he was playing. His parents said he didn’t quite understand what the event was for — him. More than 200 motorcyclists came to Electric City Harley-Davidson in Scranton, Pennsylvania on July 16th for a 70-mile poker run, music, games and plenty of food, all part of Christmas in July, organized by the Northeast Harley Owner’s Group Chapter. In its 17th year, the event has raised more than $100,000 for groups such as Ronald McDonald House Charities, said Connie Karnish, the event organizer. This year’s proceeds were going to the Arens family. At 8 months old, Christopher was diagnosed with stage-four clear cell sarcoma. Doctors removed a three-and-a-half pound tumor from his kidney, and he developed two brain tumors a couple of years later. Doctors gave him six months to live, but now, more than three years later, he has defied the odds. In another year and a half, he’ll be out of the most critical stage of remission, said his father, Kurt Arens. “He’s come a long way,” said Christopher’s mom, Chris Arens. The goal was to raise $20,000 at the event. And with almost all 250 of the $100 raffle tickets sold, the group was right on track, Ms. Karnish said. “It’s a nice show of support,” Mr. Arens said. As motorcyclists returned from the poker run, the parking lot filled. Lynn Heitmeyer and her husband, Curt, sat at a picnic table waiting for six of their buddies to return. The couple had spent the morning registering bikers for the run. Mrs. Heitmeyer said she decided to volunteer for two reasons: “It could just as easy be one of our family members, and it’s a way to see all the bikes.” And the community got to see plenty of bikes Sunday afternoon, as the event closed with a 20-minute motorcycle parade. Christopher served as grand marshal, as he sat in a sidecar. “He lives every day to the fullest,” Mrs. Arens said.
The first time Shane Drury beat cancer, they took out a chunk of his lung and parts of four ribs. He was back riding bulls within two months. The second time he beat cancer, they took out the rest of those four ribs. It took him four months to get back into rodeo. This time, there's almost nothing left to take out of Shane Drury's chest. They sure can't take his heart. Shane Drury has beaten cancer twice, but the doctors think this time the Ewing's sarcoma will be the victor. The doctors gave him 3 to 4 months to live unless he schedules chemotherapy to prolong the inevitable. That was last month. But Shane Drury has lived with cancer for four years. So he still judges at rodeos when he can; he's even scheduled a rodeo around a bunch of doctor's appointments. And he battled a bout of pneumonia as he drove to Casper to give the first Shane Drury Scholarship on June 16 at the College National Finals Rodeo. Before he left for Casper, when the pneumonia first showed up, Drury thought it might be the cancer. So he took his dogs out for a bike ride to clear his lungs. The message he posted on his Web site tells his story. The site has become his megaphone when it comes to updating family, friends and well-wishers. The day before he left for Casper, he posted about his condition. "I don't have time for pneumonia," he wrote. "Places to go and people to see." Everywhere he goes, people tell Shane Drury he doesn't look sick. And for the most part, he does look like a typical cowboy. His last chemotherapy treatment was late in 2004, so he's got most of his hair. He's got the snakeskin boots, the Copenhagen Pro Rodeo belt buckle, and the giant ring from his National Finals Rodeo appearance in 2000. He's short and compact, and looks like he'd be dynamite atop a bull. Before the cancer, he was something close to dynamite. He won a national title with Southwestern Oklahoma State University. He got trampled by his bull in the second round during the CNFR in 1999 and won the "Hard Luck Award" long before he was a true hard-luck case. He hit the pro circuit and reached the pinnacle of his career at the 2000 NFR. He finished 10th in the bull riding world standings that year. "I guess that's probably helped me through this whole deal," Shane said. "I don't give up. Where you'll see some guys that are riding that jump off or jump early or something, and I don't think I ever did that. And I don't think I'm going to with this cancer." Two years after the high of the NFR, Drury hit his first major low. He went in to see a doctor with back pains, a common problem for bull riders. But the doctors found Ewing's sarcoma, a cancer often found in children, in his lungs and bones. The chemotherapy was the hardest part. It made him weak and sick, more susceptible to pneumonia. Common colds knocked him out. It was the same when the cancer came back in 2004. Now that the cancer is here a third time, there are no more radiation treatments to eradicate the tumors. So he faces an unthinkable decision. In his next battery of tests, he thinks the doctors will tell him his tumors have grown. He'll have to decide whether to schedule more chemotherapy to contain the tumors. Spend an extra few months on earth, sick as anything? Or take less time, and enjoy it more? He hasn't made up his mind yet. "I'm about sick of seeing doctors," Drury said. As Shane sat in the CNFR media room at the Events Center the night before the scholarship presentation, a stream of coaches, officials and competitors came through. They wanted to shake Drury's hand, tell him how inspiring his story is, wish him luck.
Reid Sacco never got to fulfill his dream of attending Columbia University. The All-Scholastic swimmer from Lynnfield, Massachusetts was diagnosed with sarcoma in 2003 and had to defer his enrollment. He died last year after a two-year battle. Before Sacco died, he expressed another dream -- to one day ride in a charity bike-a-thon to fight cancers that affect adolescents and young adults. Last year, on what would have been Sacco's 21st birthday, the first Reid's Ride was held. The second will take place July 23rd. Riders will bike 28 miles from Lynnfield High to Gloucester's Stage Fort Park. Sacco, who founded the Lynnfield-North Reading cooperative swim team in 1999, will be with them in spirit, said Meredith Greeno, Sacco's cousin and the public relations chairwoman for the event. “As long as I can remember, Reid loved to go bike riding, but once he found out he had cancer, he wanted to get involved and ride for charity. It was a passion of his -- biking, not just biking, but biking for a cure to a disease he was battling.” Greeno rode last year and was the top fund-raiser, collecting more than $5,000 in pledges. Over all, 229 riders raised about $95,000 for cancer research last year. The Reid R. Sacco Memorial Foundation, which organizes Reid's Ride and other cancer fund-raisers, is hoping to top $100,000 this year. “Riding last year on Reid's 21st birthday -- it was very powerful,” said Greeno. “Obviously, it was great for the family and his friends, but we want to go beyond [last year] and help find a cure for this. It's just an awful disease affecting everyone, so we think that everyone will want to be involved,” said Greeno. Those interested in learning more about the ride and foundation can click here.
Sandcrabs Helping Student in Cancer Fight "Community" is a word many teenagers never use, unless it's preceded by "online." But for Ormand Beach, Florida student David Marz, community means more than strangers who surf the same Web sites. It's a group that includes more local people and fellow students than he would have imagined. As recently as early May, David was preparing for a summer job as a lifeguard when he felt an unusual pain. David's mom, Debbie, figured he had pulled a muscle, not unusual for someone who plays football and basketball and surfs. "I just thought, you know, too many tackles," Debbie Marz said. Never one to sit for long, David would sometimes leave spring football practice, stop at home to get his surfboard and surf until it got too dark to continue. It wasn't until Memorial Day weekend, when David was up all night pacing, that his mother noticed a lump on his back. The radiologist who read the MRI taken on Memorial Day said he was quite sure it was a Ewing's sarcoma. The diagnosis was confirmed one week later, and David was immediately sent to begin chemotherapy. On July 22, David’s Seabreeze High School football teammates along with players from several other high schools boosted David's spirits. The Seabreeze Sandcrabs head coach Mark Beech had organized a series of 7-on-7 scrimmages at the school, to help raise money for the Marz family. Donations were accepted, and Beech said several local businesses have also agreed to contribute money. "He's a great kid and everybody wants him to get better," Beech said. With David and his little sister, Jessica, both active in sports, and their parents, Debbie and Paul, always around to lend a hand, many people in the community know the family and wanted to help. The Ormond Beach Pop Warner Youth Football and Cheerleading Association, where David once played football while Jessica was a cheerleader, decided to begin a fundraising effort. "It's devastating, financially, even if both parents are employed and have good jobs and insurance," said Dee Boehm of Pop Warner, which helped put together a letter asking for prayers and donations. The letter, which was sent to current and past Pop Warner participants, outlined plans to use donations to buy a laptop computer. The laptop will enable David to attend the Florida Virtual School during his treatment, and will enable him to keep in touch with friends while he's in Gainesville. To get the ball rolling for David, the Pop Warner Board of Directors pledged $250, and the Ormond Youth Basketball Association matched the pledge. "You have these good people who exist in this world," said Dee's husband, Rick Boehm, who succeeded Paul Marz as commissioner of the Ormond Youth Basketball Association. "They've always been very involved. We recognize all that they've done. Now, it's time to rally around and support (David)." Although David never played for them, the Ormond Youth Soccer Association also matched the $250 pledge. The amount of support and good wishes the family has received has been an unexpected source of comfort for them and their close friends. "Ormond, and the people here, have just been awesome," Debbie Marz added. "I'm so thankful for the support. Without it, I don't know how we would have made it or we will make it through this."
Cancer Survivor Has Leg Up on Fellow Courage Classic Riders At 17 years old, Meaghan Cusack, of Littleton, Colorado has been training for months to participate in her second bicycle tour. She worked around her time with her high school’s color guard and training to qualify for a brown belt in Tae Kwon Do. Oh, and she did it all without a right leg. In 2001, doctors had to remove Meaghan’s leg where her osteogenic sarcoma had originated to keep it from spreading more than it already had. At 12 years old, Meaghan was already a two-time cancer survivor. She was first diagnosed with osteogenic sarcoma in her right leg at age 10. She underwent an aggressive eight-month treatment including chemotherapy and a tibia replacement. But around four months later, her cancer relapsed and was found to have spread into her lungs. After doctors amputated the leg, Meaghan was given a prosthetic. After almost two years of not being able to walk, she got back on her feet. The year Meaghan was diagnosed, her mom Anni Cusack, an experienced bike rider, started a team dubbed "Meaghan’s Mod Squad" to participate in that year’s upcoming Courage Classic, a bike ride that is The Children’s Hospital’s second biggest fund-raiser. Meaghan rode in the Courage Classic in 2003. This will be her second time riding and she’ll be partnering on a tandem bike with family friend Chris Sporl. "We raise tons of money, tons of awareness," said Anni Cusack. This will be her eighth time riding in the event. Cusack said her daughter has never felt handicapped. "I don’t really take a lot of things for granted, like walking," Meaghan said. "I have a more positive outlook on life."
Cancer Can't Keep Actor From Taking His Biggest Role Yet in 'Bye Bye Birdie'
He is tall and blond with an athletic frame, an irrepressible sense of humor
— and a passion for musical theater. When the curtain goes up on July 25th
at Kentridge High School on At The Ridge Theatre's production of "Bye Bye
Birdie," 18-year-old Travis Britt will play the male lead, Albert Peterson.
It's the biggest role he has ever had.
Washington Youth Faces Sarcoma With a Smile The three toughest words that Nathan Detweiler ever heard were, "You have cancer." Detweiler was only 22 years old when they were spoken to him. Two years later, Detweiler recalled how it affected him. "There was a lot of fear," Detweiler said. "It was something I didn't know a lot about. I knew it was something horrible." Detweiler was in the process of planning his future when he learned of his condition. "I was attending college in Goshen, Ind.," Detweiler said. "I was planning to work in social work. I wanted to work with people." Things went south after that. "I had to go to the campus hospital facility on campus," Detweiler said. "I was in a lot of pain. I had to sleep sitting up." Detweiler blamed the pain on a bicycle accident. "After hitting a tree, I thought I had broken some ribs," Detweiler said. "That's how I found out I had sarcoma." For the next two years Detweiler was in and out of the hospital. It was not an easy thing to take, especially at Detweiler's age, but he explained that he was not going through this alone. "I'm not walking this path by myself," Detweiler said. "I have God with me." Detweiler said he believed in the power of prayer. "I have people praying for me all over the world, twenty-four hours a day, seven days a week," Detweiler said. "It's humbling." "I thank God for every day," Detweiler said. "I've decided that I would rather smile for only one day than not smile and live to be 90." Four months ago he heard the three best words he could hope for: "You're cancer-free."
Taylor Johnson had just returned from cheerleading camp when she developed a lump on her left knee two summers ago. The active teen dismissed it as a sports injury, but a subsequent doctor's visit revealed osteosarcoma. Treatment included replacing Taylor's knee and tibia, physical therapy and chemotherapy. The ordeal lasted nine months -- Taylor's entire junior year. It was a physical and emotional odyssey shared by her family -- dad Mike, mom Kim and twin brother Tyler. Taylor returned to Fayetteville High School as a senior, graduating with her class in May. The cancer is gone. Life has returned to normal -- as normal as it ever can be after a brush with a life-threatening disease. "(People my age) don't realize how precious life is," the 18-year-old said. "I don't take anything for granted. I'm lucky to have my family and friends." She walks with a slight limp, a reminder of the 10-pound rod in her leg. Cheerleading and running track are no longer options, as such activities might jar the rod loose. Taylor feels the metal when the weather turns cold or when she rises after sitting. It takes her a few minutes to readjust, she said. For the most part, she's fine, able to walk, bowl and dance. She followed her parents' lead in adopting a positive attitude toward her illness from the start. "It's a scary thing, of course, but you can't dread it," Taylor agreed. "You can't dwell on why." The cancer was caught in its very early stages, contributing to a positive prognosis. It's possible the illness will return, but Taylor doesn't see much sense in fretting. "I know if I worry about it every day, I'm wasting a lot of my life on it, so I choose not to," she said. Newly developed surgical procedures allowed Taylor to keep her leg. Even five years ago, many youngsters with osteosarcoma lost the affected limb. "There were days we had to carry her out of the house and into the car to do physical therapy," Kim recalled. The therapy was needed to strengthen leg muscles and to train Taylor to walk again. The muscles, nerves and tendons around her knee all had been cut. Taylor never feared she would die but did worry initially about losing her leg. She balked at physical therapy after the surgery simply because she felt so bad, she said. Twin brother Tyler made a deal with his sister to motivate her to work at therapy. He promised to walk with her during graduation ceremonies if she strengthened her leg. He also gave her his lucky quarter, a gift Taylor still prizes. Personal and family friends rallied around to offer support. Taylor responded with mixed emotions -- both touched by the thoughtfulness and embarrassed by the outpouring of prayers, cards and gifts. She said, "I didn't want the cancer to define me ... The more I was OK with it and acted fine with it, the more other people were OK." "Taylor is much more emotionally advanced than a lot of people because of what she went through," her father said. "She's a remarkable girl." Taylor made up for lost time by plunging into activity during her senior year. She was a typical teen, spending her time at athletic events, dances and hanging out with friends. She was vice president of the school apprenticeship program, a member of the National Honor Society, the DECA marketing club and the bowling team. The honor student plans to attend the University of Arkansas in the fall, majoring in business. Taylor received a Youth Excellence Award from the Fayetteville Noon Kiwanis Club in April. The annual awards recognize students who have overcome adversity to succeed. "Taylor could have given up and stopped fighting," wrote school counselor Lesli Zeagler in a letter nominating Taylor for the award. "She could have easily decided to withdraw from school and/or her group of friends. She could have had a less than positive attitude. Anyone would have understood. She chose not to do any of these things. She got right back in her routine as soon as possible, even though some mornings it was excruciatingly painful to even walk. Taylor is a true inspiration ... She has faced an extraordinary challenge and beat it ... Her grace and attitude throughout this challenge is amazing and remarkable ... She has more inner strength than most adults I know." Taylor shared her experience with peers at a Eureka Springs School District conference in May. She was one of four teen speakers addressing reasons to abstain from sex, drugs and alcohol. Taylor shared her story to underscore how precious life is. The teenager also worked with school volunteer Cynthia Cope to plan a daffodil garden for Fayetteville High School. The daffodil is a symbol of cancer awareness and healing. "Nowadays, so many people have friends and family who have experienced cancer," Taylor said. "A garden is a good way to remember what they mean to you and replace (the trauma) with a flower that you're not afraid of." The garden will be planted by Taylor and Cope this fall. Each member of the Johnson family wears a yellow wristband inscribed with the words "Livestrong." The bands were made popular by cyclist Lance Armstrong's battle against cancer. They signify solidarity in the fight against cancer. The family has pledged to wear the bands "until they fall off and we can't find replacements," Mike said. They're a symbol of the road the Johnsons have traveled and the lessons they've learned. "None of us in the family will ever look at things the same way," Mike Johnson said. "A lot of things that we thought were important, they're not -- like work, like school, like not having time to take off during the day and do things. “We value our time together more. The little things people worry about -- we don't worry about them so much anymore."
GISTe-2-e is a special group of people who raise money for GIST Cancer Research Fund. The 13 member team recently completed a 1000 mile, 10 day bike ride from Land's End to John O Groats in the United Kingdom. The group has documented their ride on this website where you can read daily ride reports of the adventure, view ride photos, and read the lessons learned and statistics of the ride. The team was organized by Peter Thomas, a British citizen born and educated in South Africa. He is 41 years old, a 4 year GIST survivor, a life long sportsman, father of 2, and a social cyclist. Over the course of his four years of treatment, he has had 4 abdominal surgeries, in the process losing his entire stomach, spleen, left adrenal gland and 2/3 of his pancreas. He needed extensive surgery to repair his digestive track, enabling him to eat. He currently has several large tumors around his abdomen which are not operable. After trying Glivec, he was put on Pizer’s SU011248. Although his life is a struggle, Peter intends to live and live with as much passion as I he threw at the GISTe-2-e effort. He is at peace with whatever outcome may happen. His main concern is saving the lives of younger patients. Other members of the GISTe-2-e team included cyclists from the United Kingdom, United States, South Africa, and Belgium. Here are some of the lessons learned by the team: (1) You can't have too much duck tape; it is a fix for everything; (2) A good support crew will make the difference; (3) You need a good butt cream; (4) With vision and good friends in support, anything is possible. The team had a dream and they went about accomplishing it. At the time of this writing, we have been told that this bike ride has raised over $70,000. Congratulations to this great effort!
V3N4 ESUN Copyright © 2006 Liddy Shriver Sarcoma Initiative.
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