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Stories of Courage and Hope
Annotated 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.]
Tennis Keeps Coach’s Mind Off His Battle With Cancer The photographer assembled the 16 members of the Birmingham Seaholm girl’s tennis team in three rows and placed the coaches, Keith Bernacki and Paul Young, on each end of the back row. After he snapped several pictures, a breeze rolled across the court and the photographer stopped. “OK, you can fix your hair now,” he said. But that would have been an exercise in futility for Bernacki, who's 28, and who has been battling Ewing’s sarcoma for 8 ½ years. A maroon Seaholm cap covered his shaved head. “After my first year of chemo, my hair didn't come back, but now I shave it every day,” Bernacki said. “As a 28-year-old, I'm much more secure with it now than I was then.” A year ago Seaholm needed a girls coach. Bernacki had already coached Seaholm's boys for three seasons and gave the girl’s team a shot. “Coaching is something I love to do,” he said. “I love high school athletics. I love competition. It's tough to give up teaching this semester, but I wanted something to look forward to every day.” And the girls want Bernacki to be their coach. “He is an inspiration to everyone,” said junior Jessica Young. “We're so happy when he's here. He knows when to be intense and when to be fun. He's a role model for us and he's such a good person. Everybody loves him.” The girls adore Bernacki and admire the courage he has shown them. “Partly it's everything he goes through and partly the way he treats people,” said senior Jamie Wilkie. “He's more than just a coach to all of us. We can talk to him about anything.” Bernacki tries to shield the girls from his cancer. But the girls do worry, especially when he is in the middle of a week of chemo treatments. “Chemo is chemo,” he said. “It drains my energy. I don't get really sick, but your immune system gets knocked out.” By watching him at practice last week, you never would have known that Bernacki had spent the previous eight hours receiving chemotherapy. He moved from court to court, giving positive feedback to his players and offering tips. “We know when he's going through chemo,” Wilkie said. “But we can't tell the difference between a bad week and when he's having a good week. He's great all the time.” Bernacki was a 19-year-old student at the University of Michigan when the cancer first surfaced. He took a year off from school to undergo radiation and chemotherapy treatments. He was in remission for four years before the cancer came back. Just in case the chemo is too much for him, Bernacki has Paul Young, his assistant. “I've never met anyone like him,” Paul Young said. “I've never seen him have a bad day. I've seen him mad, but he doesn't take it out on anyone. That's what makes him such a great guy to work with. He has principles and he adheres to them.” Last year was a magical season for the Seaholm girls, who responded perfectly to Bernacki's coaching and won the state title. “The girls do a lot for me,” Bernacki said. “They allow me to teach them. The Seaholm tennis players have been like an extended family. When I had surgery in January the families began cooking for me twice a week. They are just one of many reasons for me to be stubborn in the situation I'm in and fight that much harder.” Bernacki's biggest concern is that his cancer would overshadow the girls and their season. He wants nothing to interfere with their tennis. “This tennis season is about the girls, it's not about me and fighting cancer,” he said. “I don't feel the need to come here and talk about my day in the doctor's office. This is their experience. I'm just a component of the team.” Bernacki view’s his cancer as just one of many challenges to overcome. “Everybody has challenges. It's definitely a top priority in my life right now. But I'm not going to let it dictate my life. I'm a teacher, a coach, a boyfriend, a brother. I'm not just a cancer patient.”
A charity cricket match in Downley, United Kingdom pulled in the crowds recently in memory of former player Adam Blackwell, who died of Ewing’s sarcoma seven years ago. He played for the Downley Cricket Club with his brother Ryan, and every year since Adam's death a charity match has been played at the club for the Adam Blackwell Trophy. Ryan said the trophy was bought by his brother and donated to the Downley Cricket Club before his death. For the first time this year the trophy was contested by four teams in a tournament at Downley Common. The winning team, Pockey’s Posers, was awarded small medals and a bottle of champagne. The event, which raised £730, was hailed a great success by Ryan. He said: "The day was fantastic, the weather just topped it off. I am thrilled that Adam's memory lives on in the hearts of people who knew him and it shows what a remarkable person he was from the amount of people that came to the event. I would like to thank every single person for the support they have given me and my family over the years. My brother is sadly missed and not a day goes by that he does not come into my mind. He was my best friend and I miss him dearly."
Two-time cancer survivor 11-year old Amanda Chamberlain headed up “The Neighbors” team at September 2nd’s Amesbury Relay for Life to benefit the American Cancer Society (ACS). This is the second time Amanda and her mother Wendy Chamberlain captained a team at Amesbury's Relay for Life. “It was very fun (last year),” said Amanda, a sixth grade high honors student at Amesbury Middle School. “I had a lot of fun and I know I'm doing something for other people. We made a lot of money.” Last year, Amanda raised $500 by herself and her team raised an additional $1,500. Amanda was diagnosed at 18 months with neuroblastoma. She was just the sixth child in the country to have a double bone marrow transplant. She was disease-free for several years but then was diagnosed in 2003 with synovial cell sarcoma on her spine. After two operations and radiation therapy, Amanda is again disease-free. “The Neighbors” team was just one of almost 30 teams of eight to 15 people each participating in the third annual Amesbury Relay for Life. “The first year we had 24 teams and raised $44,000,” co-chairperson of the event Penny Zagranis said. “Last year we had 38 teams and raised $95,000. It was phenomenal. The teams set up tents and they camp out overnight. They walk all night. Some of the teams are made up of cancer survivors, some of the teams are made up of families of cancer survivors and of cancer victims. They work really, really hard.” The first lap around the track is walked by cancer survivors. The track is ringed by luminarias, bags filled with sand and a small candle. Each luminaria bears the name of a person, who has battled cancer. “When the sun goes down,” Zagranis said, “all the bags are lit up around the track. It is very moving." She added, “I found that the Relay gives people a chance to be able to speak. It gives them a voice, a way to reach people, to let people know it can touch anyone.” The Amesbury Relay for Life is just one of many Relays held nationwide. This year, three million Relay for Life participants in 4,200 local communities across the country will raise millions of dollars to fight cancer.
Student Leader Genuinely Cared About People Andy Fluhart cared about serving University of Missouri (MU) students and wasn’t afraid to put their needs before his own, even through two bouts of cancer. “He was still planning up until the last day,” his mother, Dana Reimer, said. “He told me I’d have to reschedule a few meetings for him. Even on that last day.” Fluhart died August 30th from complications of Ewing’s sarcoma. He was 23. While running for Missouri Students Association (MSA) president last fall, Fluhart was diagnosed with a relapse of the disease. After dropping out of the race, he continued to serve as the president of Omicron Delta Kappa — a Tap Day honorary society —and was named to Homecoming Royalty. He helped organize Givestrong–a–thon in February, which raised $3,000 for the Lance Armstrong Foundation, and also was involved with the peer rape educators, STRIPES, Summer Welcome and the MSA Senate. “He had an extreme love for MU, more than any other person I’ve ever met,” said Jackie Cook-Eberle, Fluhart’s running mate for MSA’s executive office. “He got me excited, and he really cared about this university. He had a significant presence on campus.” Vice Chancellor for Student Affairs Cathy Scroggs said Fluhart never thought about himself — he thought about how to help students. “Even when he was sick, he would come in and help out with STRIPES,” she said. “He was really active in it because he was there when it started, and it was very important to him.” Jordan Hoyt, who was a peer rape educator with Fluhart, said he counseled her after she learned her 7-year-old cousin had leukemia. “Even after he was diagnosed for a second time and had his own personal issues to deal with, I could still go to him and talk about my family,” she said. “That really was a testament to his character. He was always thinking of other people.” Former STRIPES Director Melanie Lambert said of Fluhart, “He’s been a great asset to the university, and he’s been involved with everything. I don’t know anybody who’s been more involved in service than him. He genuinely cared about people and how they were doing, and that’s hard to find. Live life — that’s what he did even when he was sick. He wasn’t afraid.”
Cancer Survivor and Yu-Gi-Oh! Designer Tyler Gressle, 14, knows a lot about being a warrior. In October 2002, he was diagnosed with undifferentiated embryonic sarcoma. It was discovered when he complained of pain. His parents took him to the doctor, then to a surgeon. During surgery, the doctors discovered that the mass had burst, which caused the terrible pain. The surgeon removed 25 percent of Tyler's liver, about 6 inches of large intestine and his gall bladder. Tyler's prognosis was not good. Fortunately, his doctor had seen a case once before and had been successful in treating the patient, his mother said. "After a long, hard battle, Tyler is perfectly healthy now," his mother said. "We want other families to know they can have hope, and wishes do come true." Tyler had another wish fulfilled. The Make-a-Wish Foundation learned of Tyler and his family's battle and gave him the chance to design his own Yu-Gi-Oh! card for 4Kids Entertainment Inc. The foundation's goal is to present each child, along with their family, with a happy experience to help them feel normal in the midst of a difficult time. "All I needed was a pencil and my imagination," Tyler said. His detailed drawing depicts a warrior deflecting an evil monster's terrible weapons. They unveiled the final card on Aug. 5th. Tyler and his family were also invited to New York City to meet with officials from 4Kids Entertainment Inc. and were given a tour of the Yu-Gi-Oh! facility.
Mike Hauenstein never used to like to write. Now he writes even when his throat burns and his bones ache, when cancer-fighting drugs shroud him in the mental fog he calls "chemo brain," and when sleeping pills fail him in the middle of the night. He writes about his pain and his fears and the loves of his life - his 24-year-old wife, Ann, and their 19-month-old son, Tyler. He writes about his newly built home, about the radio-controlled airplane he's building, and about his cancer-conquering hero, cyclist Lance Armstrong, who in July won an unprecedented seventh straight Tour de France. What he desperately hopes to write, someday, is a happy ending to the story of his battle to overcome mesenchymal chondrosarcoma. He began his daily journal simply as a way to raise awareness of the cancer, but the journal has become something more - a window into the world of a strong-willed man's fierce struggle to survive. Mike’s journal can be viewed online. "At first I thought not many people would read it," he says. But, Mike sent everyone in his computer address book the link to his journal. Family and friends helped spread the word. Soon, people were leaving messages on the journal - including strangers from as far away as Brazil - to tell him he's an inspiration. In August at least 220 people have visited the Web site. There's no plea for donations. "All I'm doing is writing down what I'm going through. People are saying I'm changing the way they're looking at things." He even finds benefits to having such a horrible disease. “It's changed me for the best. I don't take a lot of things for granted like I used to." After receiving some good news that his disease had stabilized, Mike also learned that he would have to begin a new round of radiation treatments to shrink a tumor in his neck. That's in addition to his ongoing chemotherapy. In his journal, he relayed the news in his typical fashion, “I WILL WIN THIS WAR.”
Colorado Springs Woman Battles Angio Sarcoma It can be difficult to be strong when faced with a deadly cancer. But for some, that is when you find out how strong they really are. Despite being diagnosed with angio sarcoma, Colorado News First Reporter Chris Donovan has never let the smile fade from her face. Confronting the cancer head on, Chris fought back through chemo, surgery, and radiation. And nearly one year from the day she was diagnosed, Chris was told she was cancer free. She said she thanks God every morning for every day. Watch a video about Chris.
Annual Event Raises More Than $100,000 More than 1,400 luminaries bearing the names of cancer survivors and victims lit the running track for hundreds of volunteers at a park near Oklahoma State University on August 26th during the annual Relay for Life. The Relay for Life is an international fundraiser for the American Cancer Society, and began 20 years ago in Tacoma, Wash., with one man, Dr. Gordy Klatt, a colorectal surgeon. Klatt walked and ran more than 83 miles around a track for 24 hours to promote and raise money for cancer awareness and research. He raised $27,000 and sparked a worldwide tradition for similar relays in association with the American Cancer Society. This year marked Stillwater, Oklahoma’s 11th anniversary for the relay. This year’s relay increased total donations more than $20,000 from 2004, said Elizabeth Richardson, co-chair of the event. She said she was thrilled to report that about 37 teams raised more than $102,000 to donate to cancer research and awareness. The money raised stays in Oklahoma and the Stillwater area. She said in the past year, an Oklahoma State University researcher received a $1 million grant for his efforts studying the disease. Cancer strikes close to home for another OSU professor, Dr. Thad Leffingwell, assistant professor of psychology, whose daughter Claire, 7, was diagnosed with Ewing sarcoma four years ago. In honor of Claire, one professor decided to sacrifice his hairstyle in the name of cancer research. “One of my teammates had the idea that if we raised $150 tonight, he would get a mohawk, and we’ve met that goal so we started adding people and adding mohawks,” said Dr. Richard Frohock, an associate professor of English. “We’ve raised $365 so far for the haircuts.” The relay began at 7 p.m. on Friday and concluded at 7 a.m. on Saturday. The relay was set up to mirror a cancer diagnosis. It is dark when someone is diagnosed, and through the night they are exhausted from chemotherapy. Hope is signified when the sun rises in the morning and the patient is in remission. Every hour of the relay had a different theme. Disco hour, 80s hour, basketball tournaments and cakewalks provided all-night entertainment for volunteers as they walked or ran laps around the track. “It’s inspirational because at three in the morning when you’re tired you think, ‘If I were going through chemo I couldn’t quit,’ Richardson said. “Cancer is no longer a death sentence. A cure is out there.”
More than 20 children cycled in circles for cancer August 28th during Waltham's first Pan-Massachusetts Challenge Kids' Ride. The bicyclists, children of Reed Business Information employees, pedaled laps around the parking lot of the Hobbs Brook Office Park, raising almost $2,500 for the Jimmy Fund and the Dana-Farber Cancer Institute. The PMC Kids' Rides are a spin off of the Pan-Mass. Challenge, the Jimmy Fund's annual bike-a-thon for cancer research and treatment. Ryan and Hattie Wilkinson of Medfield started the Kids' Rides in 1999 when Ryan, then 8, was told he was too young to ride in the Pan-Mass. Challenge. Betsy Carroll, Reed Business Information's senior director of human resources, organized the Waltham Kids' Ride to honor two co-workers who recently died after long battles with cancer. “The PMC is such a well-organized event. There is so much enthusiasm," said Carroll, a six-time Pan-Mass. Challenge rider. "It's great to have the kids out here raising money too." Carroll began riding in the Challenge after her friend, Leslie Semonian, recruited a group of women to cycle in her honor. Semonian was diagnosed with Ewing's sarcoma at age 24. Semonian rode in the Pan-Mass. Challenge for a number of years while battling the cancer, riding tandem one year when she was undergoing chemotherapy treatment. Semonian died in December 1999 after an eight-year battle with the disease. The Pan-Mass. Challenge has now raised more than $122 million for cancer research and treatment since 1980, while the Kids' Rides have raised about $79,000 in the past six years.
David Muegge runs, laughs and plays. He proudly displays where he has lost two of his bottom teeth. He fights with his sister over a toy and talks about sleepovers. On the surface, Muegge appears like any other 7-year-old child. However, in July 2004, he was diagnosed with rhabdomyosarcoma. A soft-muscle tissue tumor in his pelvic area had gone unnoticed until his mother, Lisa Muegge, took him to the hospital for a stomach ache. Now, after 42 weeks of chemotherapy and six weeks of radiation, the tumor has shrunk and David Muegge is back to looking like an average boy. But he is far from average. He and his team, David’s Army, have raised about $5,000 for Stillwater, Oklahoma’s Relay for Life event. Relay for Life is a fundraiser that benefits the American Cancer Society. The relay is a nationwide event and is the largest source of private cancer research funding, giving more than $2.7 billion since 1946 (See the Story Annual Event Raises More Than $100,000).
Woman Won't Waste A Moment Of Life Tansy Forbes stepped out of an airplane at 10,000 feet, spread her arms and soared into the void. What followed were 30 seconds and 120 mph of wind screaming through her hair and blood surging wildly through her veins. Then the parachute unfurled, the free fall abruptly jerked to a gentle descent, and Forbes - feeling closer to heaven than to earth - began to speak to God. The 32-year-old Sioux Falls woman was praying for healing. Forbes has battled cancer since she was 13 years old, having given up her right leg above the knee at age 21, and having been recently diagnosed as terminal. But she isn't sitting around waiting on the miraculous. Nor is she ready to die. Forbes is pursuing an end-of-life treatment that includes jumping out of airplanes, sunbathing by the pool in Cancun, whistling down the highway with her husband, Jason, on a Harley-Davidson motorcycle, or howling in the crowd at a Kenny Chesney concert. “You have to celebrate the good times," she has said. Forbes was originally diagnosed with Ewing’s sarcoma at 13. She successfully completed 18 months of treatment and became a childhood cancer survivor. But survivors of childhood cancer survivors are more likely to get other cancers later in life. In the fall of her junior year of college, she was diagnosed with a new cancer - osteogenic sarcoma, probably resulting from her prior radiation treatments. An additional diagnosis of acute myeloid leukemia came in October 2004. Forbes doesn’t dwell on the “What ifs” of her prior treatment. Instead, cancer for Forbes has become what she calls "an opportunity" to celebrate and live every day as if it's her last. Her doctors told her they could try chemotherapy. But the potential damage to her heart made the 10 percent chance of a cure seem too slim. "That's when we decided, without really talking about it, that I'd rather go out as healthy as I can and not have chemo be the end of my life," Forbes says. She is not afraid to die. “The greatest unfairness is to my family and friends, not to me. I get to go to heaven and have an even bigger party, so I'm not afraid. But my thoughts are with Jason, and the heartbreak he's going to go through. It breaks my heart for my sisters and my parents having to grieve." Some day in their lives, there will be a great sadness, she knows. She understands that. So for now, she is intent on forging stronger relationships and creating only happy memories. Forbes also planned another skydiving adventure for July 2nd. "I love the free fall," she says. "It's not as much of an adrenaline rush as I hoped for. But after the free fall, you get five minutes of quiet, peaceful enjoyment. At that point you know you're fine, and that you've done it. I just want to experience that again."
Afleet Alex's Triumph Aids Campaign A photograph of the late Alexandra Scott (Alex) sits atop the piano at her parents' home, accompanied by a quotation – “The measure of life is not its duration but its donation.” By that standard, Alex's brief life of 8 years has never been more meaningful nor her impact greater than it is this year because of an almost mystical connection to the Preakness Stakes winner Afleet Alex. The thoroughbred star and Alex are linked through lemonade stands that have now become a multimillion-dollar fundraising campaign for pediatric cancer research. Doctors have no way of being sure, but they suspect Alex might have been born with a malignant tumor. By the time she was 9 months old, her parents were convinced something was wrong. Two days before her first birthday, Alex was diagnosed with neuroblastoma, an aggressive childhood cancer. She underwent six operations, with the first procedure leaving her paralyzed from the chest down. While medical experts suggested different ways to treat neuroblastoma, they said nothing could be done for the paralysis. Nevertheless, Alex ultimately learned to walk without braces. When Alex was 2, scans done on a regular basis revealed new evidence of cancer and she began chemotherapy. Her parents estimate she received 60 rounds of chemotherapy in her lifetime, involving 12 to 15 different combinations. Then shortly after she turned 4 and received a stem cell transplant, she told her parents of her desire to open a lemonade stand to help her hospital. She was so excited she went to sleep fully clothed the summer night before her 8 a.m. grand opening. Neighbors kept her busy throughout the day and, when her efforts were publicized by a local newspaper, her first stand raised more than $2,000. Alex set up her table every summer after that. By the time she was 7, cancer had spread to her kidney, liver and lung. Still, she remained indomitable. Enter Afleet Alex. Afleet Alex was purchased for a relatively modest $75,000 by five partners all having Pennsylvania roots and familiar with Alex’s story. Chuck Zacney, who formed the group, was the first to be drawn to Alex’s cause. Tim Ritchey, Afleet Alex's trainer, says: "It's fate. It's almost like we were destined to come together to try to do more than win Triple Crown races but to bring this particular cause to the American public." Though the thoroughbred is not named after Alex, the name stirs emotions for the Scotts and others. In his remarkable run at the Preakness, Afleet Alex captured the imagination of even non-racing fans and spurred donations to Alex’s lemonade stands. Helped by intense media attention after Afleet Alex's Preakness win, the Scotts say the foundation recently surpassed $2 million in gifts. And the dimes and dollars keep on coming. About 30 racetracks committed to operating Alex's Lemonade Stands on Belmont Stakes day. Many others are expected to join the list. "I can't believe what he's (Afleet Alex) done for us, the attention he's brought to childhood cancer and Alex's Lemonade Stand," Alex’s mom said. The owners group has also since agreed to donate a percentage of the proceeds from the sale of Afleet Alex gear. "You do wonder if she didn't have a plan of some sort," her mother says. "She sort of set up this thing to take off, and then she passed away. I definitely do believe her spirit is alive, very much so," her mom says, adding, "Her absence is as powerful as her being here."
Woman Fights Cancer Without Surgery, Chemo and Radiation When Kathy Eldrid applied for a new nursing job the hospital offered to give her an optional chest X-ray. Kathy agreed as she wanted to see how healthy her lungs were. However, the X-ray showed a malignant tumor in her left chest wall. She was told it was a small-cell lung carcinoma. But something didn’t make sense to her. She knew she had something serious, but she did not have the right symptoms. She also wanted no part of the recommended treatment for what she had: surgery, chemotherapy and radiation. Becoming her own best advocate, she moved from doctor to doctor trying to learn what she really had. Finally she convinced a surgeon to remove the tumor to find out what it was. She was right. It was a rare sarcoma - primitive neuroectodermal tumor. Still, Kathy would not take the recommended course of follow-up treatment - chemo and radiation. She did voluminous amounts of research. She became an expert on her own condition, reading everything she could get her hands on. She was looking for a treatment to stimulate a gene to kill her tumor. In the meantime, she changed her eating habits, opting for organic foods, vitamins, minerals and juiced fruits and vegetables. In 1996, she found a Louisiana immunologist whose experimental treatments reduced her tumor - when she could afford them. When she had no money for treatments, the tumor grew. She filed for bankruptcy in 1998 and applied for and got Social Security Disability in 1999. In 2000, she faced another roadblock. Her immunologist died. The program was disbanded and she was back to where she began - finding someone who could help her without chemo, radiation and surgery. "I got busy on the internet and I haven't left it yet," she said of her research and fund-raising efforts. She has never been able to afford health insurance other than basic Medicare. But, in the past four years, she's raised $20,000 via garage sales, the internet and mailings to her network of friends and supporters. Her condition has remained stable despite a current 8 cm tumor in her left chest wall. She's on no medication and she has little pain if she's careful about how she moves. Kathy is now convinced she is the longest living person in the world with this kind of cancer. Last spring, Kathy hand-wrote 40 doctors around the world seeking help. One return letter set her heart on fire. It was from Dr. John Nemunaitis at the Mary Crowley Medical Research Center in Dallas, Texas. She will be the first patient in his clinical trials using a virus to fight her cancer. The title of the Mary Crowley trial is unnerving: "A Phase I Dose - Escalation Trial of Intravenous Infusion with an E1B-Attenuated Adenovirus, Onyx-015, in Combination with Enbrel into Patients with Advanced Carcinoma." Dr. John Nemunaitis, who is getting ready to start his FDA-approved trial, is impressed with Kathy and how she wrote at just the right time even though she didn't know about his work. "There wasn't anyone doing this," he said. "It's uncanny how the opportunity opened up. . . . It's pretty remarkable how she's managed her disease. One of the limitations of her cancer is that there isn't good data on it. I also have to say that this new approach is very futuristic and there's little information on how this will be active in her.” In the trial, Kathy will be given intravenous infusions of a virus genetically programmed to grow inside the cancer cells to kill them. Every month, her disease will be monitored and the treatment reassessed, he said. Kathy knows why she hasn't lost this fight already, “Because I'm supposed to be educating the rest of the world about all this. I can't die before the mission is completed. What I've received from Mary Crowley is a gift and we'll watch this work. I am the guinea pig.” Dr. Michael Jones admires her persistence and her intelligent use of the volumes of information she's read. “It's made a huge difference,” he said. “She's been very aggressive in seeking alternate therapy - scientifically grounded - on her own. (This is) a tumor that no one has significant experience in with adults. She's maintained this incredible attitude. She's pretty amazing. I have to give her a lot of credit. It also probably shows the power of the Internet age. This is new for patients to come in armed with the latest data. I have seen patients derailed by the Internet, but she's been able to assess a huge amount of information in a fair way. She's become kind of an expert in these things (PNETs).” After 12 years, her failure to give up on herself and her ability to forge her own medical path now offer Kathy Eldrid the chance to save her own life.
Alicia Parlette, age 23, gives a vivid account of her first hours after being told she has alveolar soft part sarcoma. She also recounts her thoughts and experiences of the first few days after diagnosis as she undergoes PET scans, drinking barium shakes, CT scans, meeting her orthopedic oncologist, and learning that an old MRI was probably misdiagnosed. It is through these experiences that Alicia realizes that the drama of her story was a way to share her existence and to become the writer she always wanted to be. Alicia’s subsequent compelling stories became a series published in the San Francisco Chronicle, which can viewed by clicking here.
Cancer Battle Doesn't Dim Bergland's Spirits Bob Bergland, the 77-year-old former U.S. secretary of agriculture and former 7th District congressman from Minnesota is doing well even though he is in his third year battling cancer. "I'm fine," Bergland says. "I don't hurt. My spirits are good. My faith is strong. The only downside is that I get very tired. I can live with that. I sleep well." Three years ago, Bergland was serving as a regent for the University of Minnesota and was in Minneapolis for a meeting. He'd had a urinary tract infection and he passed out. He was taken to the emergency ward and diagnosed with an enlarged prostate. More examination found it to be cancer, so he was treated with a radioactive seeding. Two years ago, when the prostate cancer declined, Bergland developed a tumor in his upper left arm. A biopsy revealed it to be sarcoma. For that, he received radiation treatments five days a week for seven weeks at the U of M Cancer Clinic. Last October, cancer showed up again. Bergland is now on a trial of a new, experimental drug. You'd never know Bergland’s led a life of political achievement that took him to the top levels of government by the way he interacts with his local fellow citizens. He returned to his home town of Roseau in 1993 at age 65, where he is a community leader and remains interested in public affairs. In addition to serving a six-year term as a University of Minnesota regent, he's led battles to keep a county courthouse, and he's involved in planning for future flood protection. But given his cancer battles, none of these affairs are as important to him as the sunrise or a hug from his grandchildren. "I've changed my attitudes quite a lot," Bergland says. "My life is rather uncertain and precarious. Things I used to take for granted suddenly take on a great deal of importance—family, friends, religious beliefs, good health and nice weather. When I get up in the morning, I go outside and hear the birds and have a cup of coffee. I never used to do that."
Joe McAllister of Delaware County, Pennsylvania recently delivered the following eulogy for his 28 year old son, Sean, who fought an 18 month battle with osteosarcoma:
Seated in his wheelchair under the streetlight outside of St. Christopher's Hospital, the sight of Sean, his hospital-issued gown gently blowing in the evening summer breeze, was ethereal, almost saintly. With a bandage over his eye and a sparse uneven growth of hair covering his head and neck, the young man now looked aged, like a concentration camp survivor, waiting to be liberated.
From the side of his wheelchair hung a urine bag, filled with sulfur-colored proof that his weak, broken-down body was still functioning, trying to eliminate toxic waste even as pestilential microbes continued wreaking their daily havoc within the very core of his being.
Sean, who had always shown the invincibility of youth, shaking his fists at authority in only the way an obstinate, self-secured young man could, seemed resigned to the inevitable, the end.
After 18 months on the battlefield, strategizing with the best minds in local medicine, facing the enemy, armed with chemical warfare and even radiation, the cellular terrorists would retreat only to return camouflaged and stronger, bigger in numbers, mutating and morphing into undistinguishable and imperishable killers.
Like a soldier who has seen too much of the injustices and inhumanity of war, Sean seemed resigned but not defeated. In the face of danger, real warriors summon courage unknown to mere men. The enemy had sapped him of his physical strength and decimated his bodily organs, but a bright light illuminated within Sean, inextinguishable, his very own eternal flame.
There was no badge of courage or Purple Heart for the battle this father, son, grandson, brother, cousin and friend was fighting valiantly. Throughout history, the indefatigable spirit of man has been well documented. But it is in the daily struggles of life, facing the mundane or the perilous with quiet pride and dignity that defines warrior status. A warrior fights the fight to find his own peace. Often times, that peace comes in death.
Sean knew his reward would come not in this lifetime but lie ahead. I was witness to this. The words of a hospital deacon echoed in Sean's mind, unencumbered by the growing tumor in his brain. Sean was going home to meet the commander-in-chief -- not a bloodthirsty warmonger, but an all-forgiving being.
Calm and serene in demeanor, Sean's spirit conquered what his physical body could not. The preacher made the preliminary introductions: "Sean, Jesus...Jesus, your brother Sean." The true acceptance of this meeting propelled Sean into another dimension, outside his physical prison, freeing his soul and already releasing his spirit to a higher authority.
The words of the preacher at once reverberated inside him, filling him with the essence of a new life, one that would never end, one of joy and contentment, wrapped in the arms of his new friend.
"I love you Sean," the preacher said. "And Jesus loves you too." "Yeah, I know," said Sean, very matter-of-factly. Most true warriors are humble in the face of adversity. "Your heart, your soul is ready," the preacher said.
It wasn't so much what the preacher said but the countenance on Sean's face. He laughed, he joked, and he accepted his fate with quiet confidence. His whole being took on the aura of a true believer.
A nurse placed a wet cloth upon his head on this sweltering summer eve as Sean went out for his daily dose of fresh air, tobacco and conversation. She remarked how the position of his head, tilted downward in reverence and the stubble of his beard made him resemble Jesus. It wasn't a mere resemblance; the spirit of Jesus was and is with Sean.
Sean continued his daily vigil, knowing the enemy was approaching for the final attack. He would not flee but face the final reproach with saintly hope and dignity. But Sean was no martyr. He accepted his wrongdoings and knew there were no saints, just sinners on earth. He also knew that all his earthly transgressions were forgiven. He suffered enough for five lifetimes.
Sean is a true warrior now - a trusted servant in the army of God.
He is now standing guardian over all he loved on earth - his sons Sean and Anthony, his daughter Kayla, his brothers Cody and Dave and his little sister Anna, his grandparents who kept a daily vigil over him, his aunts who used their healing hands and bedside manner to comfort him and his mother who showed a mother's love never dies.
Thanks to all the friends and relatives who came to visit Sean, to offer comfort in his final days. For those who prayed in solitude, Sean heard every single word. Now Sean's spirit is in another realm. He is our soldier of fortune now; passing on to a life hopefully we will all know someday. Pray for us Sean...We know your friend Jesus listens to you. May we all find your strength, courage and faith to pass from this life into the next with the quiet strength and silent dignity you showed to all of us.
Rest in peace my son ... until we meet again.
Sarcoma Survivor Chosen For Cross-Country Ride [Story no longer available online 10/31/2005] One side of his back looks like it was hit by a cannonball. The other side looks like he was bitten by a shark. That's how Chris Millard, 39, describes the aftermath of 12 hours of radical surgery to remove his sarcoma. The Annapolis resident used to be so self-conscious about the scars, but now he is proud of it. He says, “It signifies the struggle I went through. If I ever need a reminder of what I went through, I can look.” Millard says his battle with cancer seven years ago is now a part of who he is -- someone devoted to helping others with the disease, and this October he'll take his mission to the national stage. Millard has been chosen from about 1,100 applicants to be part of the 24-member Bristol-Myers Squibb Tour of Hope. The 3,300-mile cross-country bicycle ride begins in San Diego on Sept. 29 and concludes in Washington, D.C., Oct. 8. This is the third year of the event, which is aimed at speeding the search for a cure for cancer and promoting clinical trials. The tour grew out of Bristol-Myers Squibb's work with Tour de France champion Lance Armstrong, and he'll lead the team at the California kickoff and in Washington for the finale, as well as join in at various points on the route. Tour members include 14 cancer survivors, as well as doctors, caregivers, researchers and nurses. The team will relay ride in 100-mile segments around the clock, meaning each cyclist will cover between 900 and 950 miles over nine days. Millard is looking forward to meeting Mr. Armstrong, but for now is focused on training. He typically rides between a half-hour and two hours on weekdays after work. On the weekend, he rides four or five hours one day and rests on the second. "As a cancer survivor, you always try to find a purpose for what you went through," he said during a break in his training. “I want to not just help out friends and colleagues, but the whole public. This, for me, is a huge privilege. I want people to know the Tour of Hope is out there.” Although Millard wasn't diagnosed until December 1997, his cancer journey dates to the fall of 1996, when he felt a bump about the size of a quarter near his shoulder. He reasoned that he'd give it a couple weeks, then have it checked out. Millard first thought it was maybe a knot in his muscle, but it never went away. It just grew. A year later, when it was a size of a softball, he went to get it looked at. It was malignant, but Millard said he was always convinced he'd beat the disease. Part of the reason Millard waited so long to see a doctor was because he didn't have health insurance until he switched jobs. Another part was denial. Beyond raising awareness, Millard's message today involves telling people not to wait like he did to get checked. Still, he said he's a better person for what he went through. “I think it changed my life for the positive, honestly,” he said. “It gives you appreciation for what you have. ... I'm closer to my family and friends (now). It slows you down a little.” Millard isn't sure what he'll do once the tour is over, but he knows he'll continue to work to raise awareness about cancer. “I don't think I can top (this), but I want to continue it,” he said.
Brave Mick’s Race Against Time A massive fund-raising drive is underway to help save an Irish man’s life. Mick Springate, 43, from Roseberry, Ireland has recently relocated to New York with his wife to pursue his only remaining treatment to beat sarcoma at Memorial Sloan Kettering Hospital. The treatment is expensive. However, Mick’s relatives and many friends have rallied around him and are determined to raise enough money, and they have organized a series of fund-raising events. He had already undergone two aggressive courses of chemotherapy in Ireland, but they failed to stop the spread of cancer to his lungs. The couple has pursued every avenue since then, but it was decided in May that the only real option that would give Mick a hope of survival was the treatment available in New York. “There are huge costs, but there is no alternative,” says Mick. “We were told it is the only option left, and I still feel healthy now. We don’t want to waste any more time.” “Our friends have really rallied around and they have been absolutely fantastic,” says Mick’s wife. “The worry of the cost is stressful on top of dealing with the disease, but they have told us: ‘don’t worry about it, we will get the money’. The couple is confident that Mick will survive. “We do believe we are going to beat it,” Mick told the Kildare Nationalist the day before he left for New York (July 18). “We both have great faith and we believe in the power of prayer, and we know all our friends are storming heaven for us.” A website has been set up for the various fund raisers scheduled.
Children’s Book Weaves Story of Cancer and Wild Camels Wild Heart Ranch Inc., a children's toy and publishing company, is pleased to announce that their new book, “Bradford and the Journey to the Desert of Lop,” will be available for ordering in September 2005. This inspiring children’s book was inspired by a young boy Brad Lawless, a 9 year old boy that had battled Ewing’s Sarcoma for 3 years and had a love for wild camels. The fictional picture book weaves elements of truth and reality to tell the tale of a brave young warrior, Bradford, and his quest to save the last remaining wild camels. In the book, Bradford is sent on a journey to the wilds of the Gobi desert to find and befriend the real life explorer, John Hare, founder of the Wild Camel Protection Foundation. The complete strangers, connected only by an interest in the unique endangered wild camels, unite to send a message of hope and courage. There are approximately 350 wild Bactrian camels in the Mongolian Great Gobi Reserve, and approximately 650 additional camels further south in Xinjiang province, China, living in three isolated and separated pockets. The wild Bactrian camel is an amazing creature that lives in one of the world’s harshest environments and in some areas in the absence of fresh water. It has adapted to drinking salt-water slush, which no other mammal can tolerate. In addition, research has shown that these wild camels, although surrounded by nuclear radiation, are immune to cancer which makes them a possibility for a cure for cancer in future research and why the preservation of these wild camels is so important. Thus, the story of real life Brad and his fight against cancer, and the fictional journey to save the camels comes full circle as we come to learn that there may be a possible cure for cancer within the genes of these wild camels. "This is a family story, not just a children’s story," commented author and Wild Heart Ranch company founder Dawn Van Zant. "It's the most important and meaningful product I have created, inspired by a powerful child that I was fortunate enough to know and love." Wild Heart Ranch is also producing a companion plush toy camel, "Judy," the cuddly mascot for the critically endangered wild Bactrian camels which children are sure to love. For further details of the work of the Wild Camel Protection Foundation click here.
V2N5 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative
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