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Stories of Courage and Hope
Story Abstracts by
Tom Swartz
[Editor’s note: Every few days we encounter an inspirational story of a patient or a caregiver that tells of the strength that some are blessed with in dealing with sarcoma. They have cancer, but cancer does not have them. These stories of courage give us hope as we face our own disease or that of a loved one or friend. We would like to share with you some of the stories that we’ve recently encountered.]
Two Time Cancer Survivor Climbs Mount Everest Sean Swarner is the first and only cancer survivor to climb Mt Everest. What is more remarkable is that Sean is a two time cancer survivor. When he was only 13, he was diagnosed with Hodgkin's disease and given three months to live. He survived. At the age of 15 he was diagnosed with Askin's Sarcoma. The prognosis was much worse as the doctors gave him only two weeks to live. Again, he survived. On May 16th, 2002, he became the first cancer survivor to summit Mt. Everest. As with his conquering of cancers, Sean then went on to reach the summits of three more of the world's seven highest peaks and has spoken internationally about his life and adventures to countless people and organizations. Sean's ultimate goal is to climb the highest mountain on each continent and trek to the North and South Poles. Between expeditions he is covering the globe with inspiration giving presentations to hospitals, organizations, universities, and businesses. For more information about Sean, as well as photos from his climbs visit click here.
In 1999, after complaining of headaches, double-vision and nausea, 12-year old Lacey was diagnosed with primitive neuroectodermal tumor (PNET)—a rare, highly malignant brain cancer and a member of the Ewing’s sarcoma family of tumors. Not accepting the 30% survival rate, Lacey underwent surgery and chemotherapy holding fast to the belief that she would survive. Today, this aspiring actress is healthy and her cancer is in complete remission. Her chances of survival are now almost three times what they originally were. As she fought against what seemed like impossible odds, she needed someone her age who could really understand what she was going through. Now, through an expedition called To The Edge And Back, she is attempting to be that someone—offering hope, support and inspiration to other kids fighting for their lives. This April, To The Edge And Back took Lacey and a small group of other pediatric cancer survivors on an extraordinary week-long adventure into the desert of Baja California, Mexico to the remote lagoon of San Ignacio where they came face-to-face with baby Gray Whales. On this amazing trip, the explorers learned about the whales’ struggle for survival and shared personal stories of their battles against cancer. The entire expedition was filmed for a documentary that To The Edge And Back is making for other kids who are currently fighting for a life beyond cancer. Lacey has the immediate goal of completing the production of the film and getting 10,000 free copies of the DVD into the hands of children battling cancer by this year’s holiday season. She is seeking tax-deductible donations to complete the film. Lacey writes, “We survivors can reach out to share our adventure experience and triumphant stories of survival with those who need it most—kids battling cancer right now. To The Edge And Back brings us all together in support of Life creating a new and powerful vision of hope for our own lives beyond disease and for the future of the planet.”
College Basketball Guru Uses Celebrityhood to Fight Cancer Dick Vitale is one of the most recognized voices in all of sports. The 66-year-old former basketball coach just celebrated his 25th season calling college basketball for ESPN and ABC. However, Vitale is more than just a college basketball expert with a few connections. Dick Vitale is the celebrity we all think we would be if we were celebrities, incredibly approachable and generous. Vitale has a word for it—celebrityhood—and he says it hasn't changed his way of life or love of people. In particular, Vitale has not forgotten his good friend Jim Valvano. Like Vitale, Valvano was a former college basketball coach-turned college basketball commentator for ESPN. In March 1993, Valvano was dying of cancer when he accepted the first Arthur Ashe Award for Courage and the first ESPY from ESPN's annual award show. Valvano then announced the formation of the V Foundation and its motto for fighting cancer: "Don't' give up. Don't ever give up." Valvano died less than two months later. "Hey man, don't forget me," Jimmy V. told Dicky V. during their last conversation. "And let's beat this disease." Vitale has not forgotten. He is on the board of directors for the V Foundation. He mentions the foundation almost daily. "Every chance I get," Vitale said. "I promised Jimmy V. that." In the last 11 years, with the help of Vitale, the V Foundation has raised more than $42 million. "He's our V Foundation evangelist," said Nick Valvano, Jim's brother and the foundation's CEO. "He promotes the foundation every single chance he gets. He's so passionate about the things he does." At the annual Coaches for Cancer college basketball tournament, Vitale takes a few minutes to tell the crowd and those watching on TV about his buddy, Jimmy V., about cancer and about how they can help. Ask Mark Kelly about Vitale’s personal commitment to help those with cancer. Kelly was 17 years old and suffering from rhabdomyosarcoma when he met Vitale at the 1992 Final Four as part of the Make-A-Wish Foundation. Kelly now works in ESPN's research department because Vitale turned the weekend into a friendship and helped Kelly land an interview with the all-sports cable network. "My life is definitely better for meeting him," Kelly said. "And I think that's the nicest thing you can say about a person." In December of 2002, Vitale introduced Kelly to the crowd at the Continental Arena in the Meadowlands. He spoke of how they met at the 1992 Final Four, why they met and what's happened since. "What I'm telling you is not a story, man," Vitale said. "This is a fact. This young man is cancer free now. Cancer free. And he was a Make-A-Wish kid. So it works. Your money works." Vitale reflects, "I'm at the stage in my life where I want to give back. A lot of celebrities shy away from people. I don't. I love people. I don't let celebrityhood change my way of life. I'm 66, and I act 13. I have the energy to match any 20-, 25-year-old. I'm now at the stage where I want to just be able to bring a smile to other people's faces because the man upstairs has made me smile a lot. I've had a lot of good things happen to me."
For the past five years Derrick Mount has fought osteosarcoma which arose in the bone of his right leg and has since spread to his lungs, ribs and spine. He’s had six lung surgeries, two spinal operations, chemotherapy, and radiation. He has exhausted treatments at Akron Children’s Hospital and even experimental protocols at the National Institutes of Health. Yet Derrick remains positive and thankful. He prominently displays his high school diploma, which was a goal of his since his first learned of his diagnosis, and which took determination and hard work to keep his grades up when the cancer got him down. Derrick enjoyed his prom which was another event in a long line of times in which people bent over backwards to help him. He also is thankful for all the people who have helped him through his treatments. Derrick’s long-term plan includes a career as a respiratory therapist. He’s already had plenty of experience from the patient’s perspective, and he believes he could work from his wheelchair. His agenda calls for a move to Florida, taking some classes, and getting a fishing boat. While Derrick acknowledges that he is dying, he says, “I’m still here and I might as well make the best of it. What can I do to get the most out of the day? What am I going to do tomorrow? I make sure I have a plan to get something done. Then I want to have fun. That’s what I live for—to enjoy life.”
Boy's Battle With Cancer Inspires Dad To Raise Research Money Twelve-year-old Brian Moore has a winsome smile that makes you wonder why he developed cancer twice in the past 4½ years. When he was eight, his mother noticed a lump on Brian's lower left leg. When it was removed it was learned that it was Ewing's sarcoma. Brian's cancer had not spread. After surgery to remove the tumor, he began chemotherapy—every three weeks for a year, which ended December 2001. As a way of thanking hospital staff for Brian’s care, Brian’s father, Perry Moore, began organizing benefits. He organized the first "Tee Off Against Cancer" Golf Outing in the summer of 2002. About 75 people participated, and $10,000 was raised. The following year the event added corporate sponsorships, and 90 golfers brought in $25,000. Last year's event drew 110 players and raised $33,000.The three-year total: $68,000. Then last summer, not long after the third fund-raiser—and 3½ years after being diagnosed with Ewing's sarcoma—Brian complained of arm pain while playing basketball. Tests revealed that Brian had another bone cancer; this time he had osteosarcoma. Last September a chunk of cancerous bone was surgically removed near the shoulder. To help stabilize and heal Brian’s upper arm, doctors took out bone from his lower right leg and grafted it onto Brian’s upper arm. Meanwhile, Brian’s father is still giving back. The fourth annual "Tee Off" fund-raiser was recently held this June, which this year added a wine tasting benefit the night before. All the monies raised have gone to "Catch the Cure" and Cincinnati Children's Hospital Medical Center. Specifically, funds will be used for pediatric cancer research being done by Dr. Timothy Cripe, the pediatric oncologist who has treated Brian. Brian, who recently completed his latest round of chemotherapy, says he's feeling "pretty good," and through it all has maintained a good attitude. His mother says, “Really, he doesn't complain. We get our strength from Brian, not the other way around."
Camp Anuenue in Hawaii, which gives children with cancer a week of fun and memories, celebrated its 20th anniversary this June. The free summer camp is sponsored annually by the American Cancer Society Hawaii Pacific for children ages 7 to 17. More than 1,000 children from Hawaii, Guam and American Samoa have attended the camp over the years, enjoying sports, arts and crafts and other activities and building friendships and self-esteem. About 800 former campers, volunteers, staff members, founders and friends were invited to a reunion at the camp. The second year of the "cancer camp," the children voted on a name and chose "Anuenue" (rainbow) because a rainbow is a sign of hope. Besides giving the children a memorable experience and helping them forget about cancer for a week, the camp gives a break to families dealing with their child's illness. A few former campers have returned as counselors. Cory Bacon, 20 years old, was diagnosed in August 1989 with rhabdomyosarcoma in the muscles around his bladder which spread to his lymph nodes. He had a grapefruit-sized tumor and was told he had only four days to live. Bacon said his parents had a choice of cutting out the tumor or treating it with chemotherapy and radiation. They chose the latter treatment, which he had until he was about 6 1/2 years old, when the tumor was gone. “I remember my attitude towards it,” he said. “There was no doubt in my mind I was going to live through it. I didn't think I was going to die. (I thought) God's on my side, I'm going to win.” He began going to the camp when he was 7. He said kids go to camp, “just to have fun and play and hang out with other people that have cancer like them, so everybody kind of understands. They're not made fun of when they're there. In camp, everyone is bald and has scars. It's one of those things. Everyone hangs out and forgets what's going on. It gives them a motive to go on for one year.”
Susan Lloyd Scholarship Fund Honors 23 Twenty three teenagers and young adults from around Fairfield County, Connecticut who have been diagnosed with cancer were recently honored at the 23rd annual Susan Lloyd Scholarship Awards Reception. The awards totaling $57,000 are financed by the Susan Fund, a Westport Connecticut based charity named after Ann Lloyd’s daughter, Susan, who succumbed to bone cancer in 1980. Since the Fund’s inception in 1982, the fund has given out 434 awards totaling $739,350. Anyone who resides in Fairfield County, has cancer, and is either in school or a training program is eligible. Though there is no age limit, most tend to be college age. Money for the scholarships comes from individuals and foundations as well as the Susan Fund’s own endowment, which sets aside more than $25,000 each year. Speaking about the event, Susan’s brother said, “If Susan could look down on us today, she would be thrilled with everything that’s going on.”
Ted Kennedy, Jr., Cancer Survivor and Advocate for The Wellness Community At the age of 12, Ted Kennedy, Jr., son of Senator Edward Kennedy from Massachusetts, was diagnosed with osteosarcoma. He lost his leg to cancer nearly 30 years ago. As a cancer survivor and health care attorney, Kennedy has devoted much of his career to working as an advocate for patients with cancer and people with disabilities. He knows all too well the frightening experience the diagnosis and treatment of cancer can be and how it is often accompanied by a feeling of isolation. “I remember the emotional isolation I experienced along with losing my hair, mouth sores, feeling sick most of the time, and having to deal with these as a seventh grader,” Kennedy said. “No one ever asked me how I was doing, or thought that my mental attitude would have an impact on how I approached the challenges I faced. Kennedy understands the power of support and how it can help a person with cancer better manage his or her cancer experience. Thus he is now involved with The Wellness Community. The Wellness Community is a national non-profit organization dedicated to providing free emotional support, education, and hope for people with cancer and their loved ones. Through participation in professionally led support groups, educational workshops, and mind/body programs utilizing the Patient Active Concept, people affected by cancer can learn vital skills to regain control, reduce feelings of isolation, and restore hope—regardless of the state of disease. It has 23 centers around the country, with four more in development. In 2002, The Wellness Community served over 25,000 people with cancer and their loved ones, who made more than 150,000 visits to their facilities. The Wellness Community also has two facilities abroad in Tel Aviv, Israel and Tokyo, Japan. They have “a terrific program,” Kennedy said, and the more he learned about the organization, the more he was convinced that “their program, which addresses the psychosocial component to cancer and recovery, is exactly what cancer patients really need.” As a member of the board of The Wellness Community, Kennedy is actively involved in new initiatives. He was the first moderator of the real-time Internet-based program, The Virtual Wellness Community, launched in February 2002, provides free, professionally moderated support groups for people with cancer. “My personal cancer experience taught me the importance of having a strong support network. It was so meaningful for me to talk with others facing the same challenges,” he said. “As long as there are lots of questions that remain unanswered, patients will experience anxiety, depression, and fear, which organizations such as The Wellness Community can help through their support network. The organization can pair up patients to talk either face-to-face or now online through the Internet about their different experiences, strengths and resources,” he said. Kennedy strongly advocates that patients “be empowered” to beat this disease. He strongly believes that patients need to ask a lot of questions and make sure they are answered. They need to take an active role in the decision-making and treatment process. Patients also need to seek out local groups and individuals for support to avoid being isolated emotionally. “If patients are more empowered, they won’t feel as depressed and hopeless,” he said.
Dylan Crane, a 13-year-old St. Petersburg boy who created an award-winning documentary about his struggle with Ewing’s sarcoma and became an inspiration to adults and youth alike, died June 8th. Dylan had been in intensive care, heavily sedated, for six weeks. But during that time, his documentary about his struggle with cancer debuted on television as part of the All-Children's Hospital telethon. His movie was featured in a Floridian story on May 22. And his film won first place in Florida's regional student media awards. Dylan had planned to make My Cancer Miracle a trilogy. His mother writes of Dylan, "I never knew such a young boy could have such an old soul, and be so brave plus generous to share his story with the world to help others. The spirit of such a special boy will never die. ... Thousands of people were moved by his courage, his sense of optimism, and his dedication to his love of film making. The miracle was here all along. The miracle was Dylan." To view portions of Dylan’s documentary, click here.
V2N4 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative.
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