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Stories of Courage & Hope
Annotations by Tom Swartz
In this issue's column:
'Network' helps with teen boy's cancer On good days, Heath Sammons doesn't look sick. With his black cap pulled down over his ears and his long shirt and baggy pants, Heath looks like any other teenager ready for a fun time. But on bad days, when his body is depleted of energy from massive doses of chemotherapy, it's obvious something is seriously wrong with the 18-year-old musician and songwriter. And when Heath takes off his cap, his bald head reveals the telltale sign of chemotherapy. Heath has osteosarcoma. On those bad days, following treatment with the powerful chemo drug Cisplantin at Moffitt Cancer Center, Heath is immobile as his body reacts to the poison necessary to kill the tumor growing at the base of his spine. Not even buddies from his band, Kileva, also known as the Allen Litchburg Experience, can coax him off the couch. But after the side effects have ebbed and life returns somewhat to normal before the next round of chemo begins, Heath picks up his guitar and lets his feelings flow through words and music that come from his heart. He and his band already have a local following. And he is not facing the disease alone. Heath has a deeply concerned extended family to see him through, from parents and siblings to his dad's coworkers in the Manatee County Sheriff's Office, and generations of friends and relatives from First Baptist Church and Buck and Vera Jo's Grace Sunday School Class. When the bad days hit, Heath's network is there making sure the meals are prepared, errands are run and someone is always ready to listen. That network, said his mother, Karis Meier, "has been our lifeline." Heath's ordeal began Jan. 7, when a skateboard accident put an end to daredevil tricks. The spill proved to be a godsend. Had it not been for the intensifying pain Heath experienced as days and weeks passed after the accident, doctors would not have discovered the cancer in time to begin treatment. "We wouldn't have known," Meier said as she looked at the spreadsheets and color-coded calendars her husband and Heath's stepfather, Jim, designed to track Heath's appointments, hospitalizations and medicines. "We could have lost him if we hadn't learned about the cancer." His cancer diagnosis came early enough to give Heath a good chance for recovery, said Letson. But treatment options are limited by the tumor's location. Because Heath's tumor is in the tailbone and wrapped around the sciatic nerve, surgery is not an option, said Letson. Cutting out the cancer would leave Heath unable to control his bodily functions. The alternative prescribed by Letson, in consultation with Dr. Peter Anderson at M.D. Anderson Cancer Center in Texas, includes massive doses of chemotherapy to prepare him for Proton Beam Radiation at Massachusetts General Hospital in Boston. Massachusetts General is one of the few acute care facilities in the United States that can offer proton beam radiation, which the National Cancer Institute describes as a type of radiation therapy that reaches deep tumors with high-energy X-rays made by a machine called a linear accelerator. But photon beam radiation could leave Heath sterile. Heath and his family have taken the precaution to have sperm frozen so one day he may be blessed with a child of his own. Heath doesn't wince, talking about such preparations. They are part of a regimen he has learned to accept. Halfway through his chemo treatment, he still has three more months to go before undergoing radiation. Heath's father, Lt. Gary Sammons of the Manatee County Sheriff's Office, cannot forget the day he heard the news. "When his mom called and told me the results, it was hard," Sammons said. "The first thing you want to do is take it on yourself, let it happen to me, instead of him. His mom has been a real strong trooper staying on top of everything." Heath's dad helps him forget - if just for a little while - the reality of what is happening to him. "Whenever he gets well, I try to think of something to do with him," Sammons said. "We go fishing as much as we can. But it's hard for him. Because of the risk of infection, he can't bait his own hook. We have to baby him. That gets to him. I think he is more frustrated with not being able to do what he wants to do." Click here to access a blog about Heath.
Teen's fight for her life renews hope for manySome people are amazed that a single girl has touched the hearts and renewed the hope of so many. But it doesn't surprise those closest to Hannah Sobeski, a Spartanburg, South Carolina teen now fighting for her life. Hannah, 17, a rising senior at Dorman High, is receiving treatment at M.D. Anderson Cancer Center for high-grade round-cell sarcoma. Doctors found a malignant tumor in her groin area and removed it in May. "Doctors removed 90 to 95 percent of (the tumor). They couldn't remove the other 5 percent because it was wrapped around her blood supply to the right leg," explained Hannah's aunt, Hope Houchins. Only five weeks after surgery, Hannah's tumor had grown back to the size of a cantaloupe. Loved ones back home are praying for a miracle as her cancer continues to spread. Doctors have told Hannah's parents, Mickey and Debbie Sobeski, there is little they can do now. According to Houchins, Hannah's recent round of chemotherapy has done all it is going to do. Hannah cannot have another round of chemo for a couple more weeks. When Hannah's tumor was first discovered, family members say the teenager never asked, "Why me?" She remained cheerful and went about life as if everything was normal. "I'll be back to school and on student council," Hannah told Teresa Page, her uncle's sister-in-law.
Bombarded with e-mails and phone calls, Houchins decided to set up a webpage with daily updates on Hannah's condition. Friends arranged for the Sobeskis to get a laptop computer so they could check the site and e-mail loved ones. The number of visitors to Hannah's site stunned Houchins. There were nearly 13,000 hits a week after the site was set up. "I could not believe it. I thought the counter was broken," she said. Hundreds of people have signed the site's guestbook and posted Bible verses. There are words of encouragement from people across the United States and as far away as Turkey. "Hannah either logs on every day or one of her parents reads it to her," Houchins said. "When they're at their lowest it never fails that a scripture someone shares is exactly what they need to hear." Several people say the Sobeskis' incredible faith has not wavered. Houchins said Hannah's younger brothers, Michael, 14, and Andrew, 12, have also been remarkably strong. "As hard as it might be to swallow, I know that God has a plan for my life and that this is all in His good and perfect will that I go through this trial that He has set before me," Hannah is quoted on her Web site. Many say their faith has grown because they have witnessed the Sobeski family's response in the face of this great crisis. "There is no question that my faith has grown beyond measure because of this. Outside of God, there is no hope," Houchins said. "To see so many people share that hope has given me such a renewal in my faith and in people." Teresa Page, who is Houchins' sister, is "awed" by the effect Hannah has had on so many people in just a short time. Page, a cancer survivor, said the sweet, considerate girl she's always known has become "a woman of strength" through her battle with cancer. In a world where it seems most news is bad news, Page said she has seen the "goodness in people" in their kindness and generosity to the Sobeskis. "I go to the Web site daily for renewal in my faith and in people," Page said. Seth Buckley, minister of students at First Baptist Spartanburg, has known the Sobeski family for 10 years. Hannah is very involved in the church's student ministry. She leads a discipleship group, sings in the Mirror Image Choir and has been on two mission trips to Kentucky. "Hannah is a young lady of great faith. She is really trusting that God knows exactly what is going on. It's hard for a nonbeliever to really understand what that would mean," Buckley said. "She's not fearful." Buckley said Hannah wants to make a difference in other people's lives. "Hannah is one of those people that comes into your life and you never forget her," he said. "She's always reaching out to friends, encouraging them and lifting them up. It's never about herself." Ally Farmer, 17, of Boiling Springs, has been Hannah's friend since fifth grade. Farmer said none of Hannah's friends knew the extent of her pain when she became ill. Hannah remained lighthearted and even joked about her illness. "I consider her my hero. I will until the day I die. She's the strongest person I've ever met," Farmer said. A nurse told the family that Hannah would spend the next two months fighting for her life, Houchins said. "More than anything they need our prayers for strength and grace," she said. Houchins compared Hannah's battle with cancer to a storm. "If we are not better people because of Hannah's storm, then she has suffered in vain for those of us who haven't grown from it."
General store proprietor stays upbeat as he battles sarcoma You need a bag for this, young lady?" Joel Bloom says to a customer. Definitely no young lady, she nods and Bloom bags her items, while another customer - a generous term given the man's tattered clothes and general incoherence - fingers a box of cigars. "How much?" the homeless man mumbles. "I can't see what it is," Bloom shoots back, his voice half gravel and half razor. The man holds up the cigars. "You don't have enough money," Bloom says, his tone matter-of-fact. There is tired patience there, but any hint of sympathy is buried under 20 years of Downtown static. The constant pain of soft-tissue sarcoma doesn't help. With finality, he adds, "Would you please get out of here." The signature voice works, and the man shuffles out just behind the paying customer. This is what Joel Bloom does, operating his 11-year-old Bloom's General Store in the Arts District, smack in the gentrifying, mercurial border between the heart of Downtown Los Angeles and its scruffy eastern edge. It's an area he has called home since 1986, a few years after following a California-bound exodus of Chicago-based theater types. But his past may be catching up to him. More than three decades ago, Bloom served as a combat cameraman with the U.S. Air Force in Vietnam. Just as his experiences there nudged him toward activism in the Arts District, Bloom believes that incidental contact with Agent Orange during the war years may be connected to his sarcoma he has been enduring for the last half-decade. Last week, a surgical oncologist at the Wadsworth VA hospital in West L.A. told Bloom to hang on for the Sept. 26 meeting of the so-called UCLA "Tumor Board," which will decide the fate of the latest growth in his abdomen. If he does go in for surgery, it will be his fourth in just over five years. "This one, I don't know what its doing. I think the bladder's down there," he boomed, gesturing southward. "All I know is, it hurts constantly." No matter the cause, the cancer has already dialed back his hours at the General Store, and he now hires workers to mind the neighborhood landmark in the afternoons. Bloom's time behind the counter, it would seem, is winding down.
When he got out of the service in 1974, he finished a degree in psychology from the University of Illinois, and then searched for work at various Chicago-area TV stations. Finding no luck there, he fell in with The Second City theater troupe as a stage manager. He'd later work with the Organic Theater Company and tour with the 1985-86 production of David Mamet's Glengarry Glenn Ross. By then Bloom had moved to Los Angeles. After a stint on the Westside and having taken a shine to Al's Bar, he put down roots in the Arts District in 1986, joining Shakespeare Festival/LA as a stage manager and putting together projects of his own. In October 1994, he started up Bloom's General Store to meet the day-to-day sundry needs he found glaringly absent in the district. Starting with just toilet paper and a handful of other items, the shop now stocks all manner of tobacco, magazines, groceries and the like. Bloom had a hand in getting the Arts District its due designation, and also applied enough pressure to bring the community a bus stop, 30 streetlights and 75 trees. He even managed to stave off a push by the LAUSD to consolidate its warehouse operations in an old loading dock in the area. Instead, the district eventually got the Southern California Institute of Architecture. His achievements had him calling himself "the mayor" of the Arts District for a time, but he's since given up the title.
The cancer has cut down the amount of time Bloom can devote to his activism, but it also has him in a more reflective state of mind. It's even brought him a better understanding of why he feels so attached to such a frayed locale. "When I got out [of the Air Force], there was so much negative energy. Subconsciously, I've always wanted to rebuild that village. I didn't realize that. I think that's part of my motivation," he says, gazing out the open door of his shop. "But building this - gentrification or not - subconsciously that's a part of why I do what I do." The first round of surgery was interesting enough, the way Bloom explains it. After experiencing back pain on and off in 1999 - at the height of his unofficial mayoral term - doctors detected a tumor. On Dec. 25, 2000, the first of Bloom's two grandsons was born. The next day, doctors biopsied the tumor. In the first week of January 2001, he underwent 10 hours of surgery at UCLA; the surgeons had to work their way around Bloom's internal organs. "They had to take everything out and put it back in," is how Bloom puts it. By the end of the surgery, the doctors had netted three massive tumors from Bloom's midsection. One of the malignant growths had been impinging on his kidney, causing the back pain. Living for a week off a hospital IV, Bloom channeled Lipton Tea commercials in his dreams, the kind featuring a clay-animated Babe Ruth. The dreams persisted for days. "Finally... I told the doctor, 'I'm finally dreaming of naked women again. I must be getting better,'" he says, roaring with laughter. He was indeed getting better, although he's been back twice. Each surgery was a lesser procedure, but he's not out of the woods yet. "The danger is, it's already shrunk my kidney. The last one was pressing on my abdominal aorta and vena cava," he says. He also believes he has something to blame. In a veteran newsletter emailed to him after his first surgery, Bloom came across a cautiously worded connection between Agent Orange - the defoliant used to clear vast swaths of Vietnamese jungle to make air-to-ground war that much easier - and soft-tissue sarcoma, a relatively rare cancer. The connection, neither confirmable nor unconfirmed, made it possible for Bloom to get military disability. Come Sept. 26 and the Tumor Board meeting, he'll learn the course of action his doctors want to take. Chemo and radiation are on the table, but his doctors are keeping him apprised of experimental treatments. "All I know is, when I was at UCLA, my first roommate was on some sort of thing using rat's blood," Bloom says, chuckling. "I'm sure rat's blood can't be good for you." Still, he takes the long view, a quality that's made possible his two decades of Downtown life. "From everything that I've read, there's always the miracle case," he says. "At some point you have to look at it like, it might not do me any good, but sometime down the line it's got to do somebody some good."
From the first moment Chelsea Cohen heard that she had cancer, she started fighting it. And she never stopped. Cohen, once a standout player on the Norwalk Connecticut High School girls' soccer team, fought the sarcoma that infected her spine and her brain for almost three years. She fought through dozens upon dozens of chemotherapy and radiation treatments. She tried various experimental drugs. Whatever the doctors asked her to do, Cohen did it. Because she was determined to beat cancer. Cohen's amazing fight and her incredible attitude were so moving that the Fairfield County Sports Commission honored her by naming her the first recipient of its Courage Award at its Hall of Fame banquet in October of 2005. That night, Cohen, in a wheelchair, received a long and deserved standing ovation. And as word of Cohen's fight grew, so did the support for her. The entire Norwalk community rallied around Chelsea and her family. Students from both schools joined the cause, at times helping with yard work around Chelsea's house, but more importantly, selling several thousand Carolina-blue wrist bands with the word "Hope" on them to show their support for Cohen's fight. This past May 13, Mayor Richard Moccia proclaimed it "Chelsea Cohen Day" as car washes were held all over the city to help raise money to pay for Chelsea's medical and rehabilitation bills. And in June, Cohen, despite her illness, achieved perhaps her greatest goal — graduating with her Norwalk High class. She was chosen by her classmates to be the keynote speaker at the ceremony. At that time, the cancer had blinded her in one eye, had taken away her hearing and had severely affected the nerves in her face, all of which made her fight harder. Sadly, on Aug. 2, just a few weeks shy of her 18th birthday, Chelsea Cohen lost her fight with cancer. A few days later, nearly 1,000 people sat in the Brien McMahon auditorium to honor Chelsea as teachers, friends and classmates remembered her with old stories and memories of her life. "Chelsea touched our hearts and touched our souls," said Moccia at the ceremony. "I always saw a light in her eyes. We should all give thanks that we met and knew Chelsea." Thanks to the Fairfield County Sports Commission, Chelsea's memory, and her light, will now live forever. The commission announced that it has renamed its Courage Award the Chelsea Cohen Courage Award, and that Sacred Heart baseball player Jason Maiella will receive the award at the commission's 2006 Hall of Fame dinner on Oct. 23 at the Westin Hotel in Stamford. Cohen's parents, Barbara Rittner and Larry Cohen, will present the award to Miaella. "When Chelsea passed away, our immediate thought was how could we honor her memory for the long struggle she endured, while keeping such a positive outlook and inspiring all of us along the way," commission executive director Tom Chiappetta said. "Having our courage award each year be presented in her name will be a lasting tribute to a young lady who fought the worst of opponents right to the end."
Three-peat survivor returns to relay To put it simply, the new century has been rough on Tracy Milner. In the last four years, she's been diagnosed with synovial sarcoma, three times. Synovial sarcoma accounts for only five to 10 percent of all soft tissue cancers. In Milner’s case, she is only 1 of 12 cases on record of her specific type of synovial sarcoma, which grew between her chest cavity and rib cage. Most synovial sarcomas develop in the legs. It all started in 2002. In November of that year, Milner started having pain under her left breast. “I put it off and finally in January, I told my mom,” she said. At first, they checked her heart and found nothing wrong. Subsequently they looked at other causes, including scar tissue from a previous bout of pneumonia, an ulcer and eventually acid reflux disease. “I was just hopping back and forth,” she said. “Even taking medicine for ulcers, for acid reflux, the pain was still there.” One day, after a particularly painful day at work, she went to the emergency room. The next day, she was referred to Dr. Gary Earle. “I knew when they told me I needed to see Dr. Earle, it was bad,” she said. “But I would have never thought in a hundred years it was cancer.” In August 2003, she had the first tumor removed. “There was like a one percent chance it could come back,” she said. In April 2004, it did. She then had an 11-centimeter (about the size of a softball) tumor removed. That time, doctors removed half of a rib, part of her diaphragm and they scraped her lung. The second bout was the most challenging for her physically. On June 1, 2004, she started chemotherapy. On June 3, she lapsed into a coma. “There was a one percent chance that a person could go into a coma,” she said. “And I was in that one percent.” She remained in the coma until June 7. The doctors stopped the chemotherapy when she went into the coma and was discharged on June 18, 2004. She resumed chemotherapy in July 2004 and continued until September. That time her Port-a-Cath malfunctioned and the chemo went into her skin. “I had to go back in the hospital and have the Port-a-Cath removed,” she said. After finally finishing the chemo, Milner, thought she was home-free. In February 2005, she had a checkup and at the time no cancer was found. With that in mind, she walked into the 2005 Relay for Life on July 15 to receive her survivor's ribbon. “I walked in thinking I was cancer-free, but I wasn't,” she said. Shortly after that, she went in for chest x-rays and a CAT scan and immediately knew something was wrong. “You can pretty much tell when something's not right,” she said. “I knew.” Once again, the cancer had returned, another 11-centimeter tumor. In October and November 2005, she went through five weeks of radiation in preparation for surgery. This time, she would travel to Brigham and Women's Hospital in Boston for the procedure. On Jan. 6, 2006, she had another 2.7-centimeter tumor removed. Along with that tumor, she lost two-and a half ribs. This time, doctors replaced all three of her lost ribs with Gore-Tex mesh. The size of the tumors and especially the rate at which they grow - 11 centimeters in just a few months - are a mystery to Milner. “They don't know what causes it,” she said. So far, Milner is cancer-free once again and looked forward to the Relay for Life. “I think everybody should go to Relay for Life,” she said. “If you have a family member that's been sick, you need to be there.” With each diagnosis, Milner said public support grows. After her second bout, she said she was on prayer lists all over her home state of Indiana. The support has been crucial to her recovery. After her second cancer, she lost 30 to 40 lbs. Her illness left her in a state of deep depression. “At one point I didn't care if I lived or died,” she said. “I said, ‘You know, you have got to get yourself up and push yourself.' “I just felt like the good Lord had gotten me this far, he had pulled me through the coma, now it was my turn to do the rest of the work.” Her family - including her three daughters, Michelle Morgan, 24, Amber Milner, 22, and Trista Milner, 20 - and friends have helped her immensely in her recovery. Milner said her brother Michael and her ex-in-laws, Bill and Betty Milner, helped with finances for the Boston trip. She said her boyfriend and mother were also very supportive and helpful. In fact, several people accompanied her to Boston to support her during her third surgery. “I had my own little rooting section,” she said. That was juxtaposed against the many people she saw there who had no family or friends to see them through. “It made a difference,” she said. “There was always somebody who was helping me do something.” Milner saw her doctors this September and if that checkup is clean, she won't go back until next spring. “We're hoping for good things,” she said, noting she keeps a cautious optimism.
Osteosarcoma cyclist helps raise money for Children’s Hospital In June, two thousand cyclists crossed the finish line in the 157-mile Courage Classic raising about $1.7 million for Children’s Hospital, Denver, Colorado event organizers said. The event has been held for the past 17 years and is a significant source of funding for the hospital and its programs. Many of the participants have overcome illnesses and other challenges. One of the participants was Meaghan Cusack of Littleton who was 10 years old when she was diagnosed with osteogenic sarcoma in her right leg. She went through eight months of chemo treatments, a tibia replacement and was pronounced cancer free. Four months later she relapsed. After more chemo, the doctors amputated her right leg. She was given a prosthetic limb that gave her the chance to become active again. She has now finished the event for the second time.
In January 2005, Fort Wayne, Indiana businessman and Lifetime Sports Academy co-founder Tom Jehl was diagnosed with aggressive strains of sarcoma and carcinoma. A few weeks later, doctors at the Mayo Clinic told Jehl he had six months to live. Jehl died September 12th at age 76. This story is how he turned that prediction into 21 months with the help of some young friends. When Jehl was informed of his diagnosis, one of the first people he called was University of Saint Francis Football coach Kevin Donley. The pair had met eight years earlier while waiting to participate in an hour-long radio sports show. “I didn’t know anything about Lifetime Sports Academy and Tom Jehl,” Donley said, “and he didn’t know anything about me and thought I was a fool to start a football team at Saint Francis. I thought, ‘This guy’s getting a half-hour of my deal,’ and he’s thinking, ‘I’m getting a half-hour of his deal and they’ll never” play a game.’ Almost, but not quite. “I was trying not to listen to him,” Jehl said a few weeks ago, laughing. “Out of the corner of my ear I hear him say ‘We intend to win a national championship,’ and I was like, Oh, brother, are we bringing a caseload to Fort Wayne! And he’s on before me?” A former Central Catholic quarterback, class of 1948, Jehl’s first love was football. He played his college ball at Loras College in Dubuque, Iowa, before joining the Air Force, and it had always been his dream that Fort Wayne high school players would have a closer option. A few weeks after their meeting, Jehl walked into Donley’s office and asked how he could help. Over the next few years, Jehl helped the school name the football stadium after Bishop John M. D’Arcy and then was the major contributor to get artificial turf for the stadium. “I don’t think we’d be where we are with our football program without him,” Donley said. “He’s been such a mentor to me and a friend to me and has helped me in this community to know what the heck to do. He turned out to be one of the best friends I have in life.” In April 2005, Donley and Saint Francis President Sister M. Elise Kriss asked Jehl to attend a healing prayer Mass at Trinity Hall. When Jehl and his wife, Marg, arrived early, Kriss said Donley wanted them to stop by a spring football practice. As Jehl approached the field, Donley dismissed the players. The Jehls and Kriss walked to the front of the building where the team was waiting, pointing up to “Tom Jehl Football Complex” posted on the side of the building. “I had no clue,” Jehl said. “I never heard a cheer so loud in all my life.” Then I thought, ‘What the heck am I going to say?’ Afterward Donley made a few remarks, talking about how the players had been praying for Jehl every day and were dedicating the season to him. Jehl remembered making a few comments, mostly saying the right things, including telling the players maybe he could make it to the first game in September. “Mr. Jehl, the final game is Dec. 15, and you aren’t getting off the hook until then,” linebacker Brian Kurtz said. “You’re going to be around here until Dec. 15, and we’re going to win it all for you.” The players presented Jehl with a silver ring from their runner-up finish in 2004 and told him the goal was to get him a gold one the next season. Jehl said he’d try. After all, the Cougars had lost the title in the final seconds and would be favored to return to the championship game. “I kind of got revved up a little bit, and I had been pretty negative about the whole future of my health,” Jehl said. “I wasn’t doing myself any good walking around and talking about my time period and such. About a week after the Mass, I began to change completely. I figured they went to all that trouble, so who was I to walk around with such a negative attitude?” The doctors’ prognosis never wavered, but Jehl kept fighting with natural herbs, prayers and encouragement. Inhaling energy from the children at Lifetime Sports Academy, he made it through the summer as the Cougars prepared for another title try. With Jehl watching every game from the sidelines, the Cougars kept rolling. “It was like living in one of the most unbelievable stories of all time, and I felt it all the way,” Jehl said. “They knew I was there, and I knew they were there. They put their heart into it, and many said they’d be praying for me every day.” The Cougars again reached the national title game. Jehl flew to the game with friends and gave a pre-game prayer, saying “Let’s finish the job,” at the end. This time the score wasn’t so close. Carroll College won 27-10. After the game, Jehl didn’t say anything to the players, just climbed on the plane for the ride home. He knew there was nothing he could say. “The other team was more ready for us,” he said. “It was a good fight, and a couple of plays turned things around. They came that close. I think that if they had won that game, I’d have been cured right there.” But the cancer was spreading, and Jehl spent more time than ever this summer at Lifetime Sports Academy, talking with coaches and enjoying the kids. Though he was unable to go to the Cougars’ season-opening game this September, he attended the Saint Francis preseason scrimmage 15 months past his original diagnosis. The Cougars taught Jehl about determination, and he gave them inspiration for another season.
University junior lobbies for Cancer funds in Washington Jenna Langer still remembers the day she was told she had cancer. Nearly three years ago, Langer was diagnosed with osteosarcoma. "Being 17, I didn't really know what cancer was," Langer said. "All I can remember hearing is my mom weeping and that's what really got me." The week of September 18th, the public relations junior was in Washington, D.C., as part of an American Cancer Society national lobbying event called "Celebration on the Hill." While osteosarcoma itself is not that rare of a pediatric disease, the site of Langer's tumor was. It was in her sphenoid sinus, around her brain and carotid artery. "My doctor from Mayo (Clinic) had only ever seen my case in one other girl," Langer said. Langer serves as the American Cancer Society ambassador for Minnesota's 5th Congressional District, volunteers in the pediatric oncology department at University Medical Center, Fairview, and is a member of Colleges Against Cancer, a nationwide student group. Shannon Guernsey, ACS vice president of governmental relations for the Midwest division, said the event in Washington was meant to get Congress to commit to funding cancer research. Langer couldn't be treated with regular chemotherapy, so doctors used a kind of innovative radiation to kill the tumor. Langer now has been cancer-free for almost two years, though her tumor is inoperable. "I consider myself to be in remission," Langer said. "I'll never be free of the tumor; it's still there and they monitor how active the cells are using CAT scans." "I'm living proof that cancer research is very important, and that we are making progress," Langer said.
Maddie's friends raise $20,000 Maddie's mountain moved a little the weekend of October 7-8 when about 300 guests flocked into the Michelangelo Banquet Centre to support a brave teenager's struggle with cancer. With live music, lots of young friends and no tubes in her body, it was one of the rare times in the past two-and-a-half years that 15-year-old Maddie Babineau was allowed to be a teenager. She was just 12 years old in June 2004 when she was diagnosed with Ewing's sarcoma. Since then, she's undergone chemo and radiation therapy, surgery and long periods of hospitalization at McMaster Sick Children's Hospital as well as Toronto Sick Kids. The weekend event, which raised $20,000 for the teenager, was organized by volunteer group called Moving Mountains for Maddie. The funds will help Sharon Babineau, 47, defray some of the out-of-pocket expenses associated with her daughter's disease. But more than money, the benefit was a big morale boost for the Babineau family, which has been fatherless since Stephen Babineau died of ALS (amyotrophic lateral sclerosis), or Lou Gehrig's disease, several years ago. "It really lifted their spirits and made them feel loved," said Roberta Monte, a friend who helped organize the benefit. Sharon has been chronicling her daughter's ordeal through a blog called Maddie's Journey. For the family, it's been on an emotional roller-coaster as the disease has ebbed and flowed through her body. By the spring of 2005, it looked as if Maddie was getting the upper hand and she was well enough to take a trip to Disney World in Florida for March break. A couple of months later, she participated in a 12-hour walking relay and raised $1,000 for cancer. "Each step now will be a step forward towards Maddie becoming stronger and healthier," Roberta blogged on May 11, 2005. "Our next big celebration will be Maddie's five-year mark when they can officially say she is cured," she added. She hinted they might climb Everest together to celebrate the milestone. But in March, they were back at the base of the mountain when they learned the cancer had cropped up in her shoulder. She's undergoing another round of treatment and is scheduled for another operation soon. She takes her food through a tube and seldom gets out of the hospital. But she was allowed a brief pass for her birthday on Aug. 24. Roberta, who also has a son Derek, isn't talking loosely when she uses mountaineering metaphors to describe the ordeal she shares with her daughter. In Maddie, she's got a gritty and determined climbing partner, whom she described in a blog as "a trooper."
Sarcoma walk raises over $7,000 One day, Bob Ferretti felt a sharp pain in his stomach. He went to the hospital, and doctors soon determined that he had sarcoma. "At first, they thought maybe he needed a liver transplant," Ferretti's mother Rita said. Unfortunately Bob Ferretti, 24, died from sarcoma around this time last year. However, on September 24th, Rita Ferretti held the first sarcoma walk in his memory. The event took place at the Gloucester Township Elementary School in Gloucester Township, NJ. Participants walked about three miles down the adjacent bike trail. Rita Ferretti explained why she selected that location for the first sarcoma walk. "I thought it would be nice to have it here. He (Bob Ferretti) grew up right around the corner," she said. A registration fee wasn't required, but donations for the walk were encouraged, Rita Ferretti said. The sarcoma walk raised about $7,000. All proceeds will go toward the Sarcoma Foundation of America, Rita Ferretti said. Mario's Pizza handed out complementary slices of pizza for walk participants. Those who took part in the event also received a free T-shirt as well as bracelets similar to the "Livestrong" Lance Armstrong bands. Rita Ferretti believes the first sarcoma walk was a success. "I am very pleased with the turnout," she said. Kristen Riebiger, who participated in the walk, knew Bob Ferretti through his sister, Lisa. She came out because she wanted to help raise awareness for the cancer that took Bob Ferretti's life. "No one really hears of sarcoma," Riebiger said. To others, like Greg Laurent, it was all about being there for friend. "We wanted to show our support," he said. In light of the walk's success, Rita Ferretti foresees a second annual sarcoma walk taking place in the township. I'd like to do it this time every year," she said. In addition to the walk, Rita Ferretti planted a tree in her son's memory near the gazebo on Church Street in the Blackwood section. The township's hockey league also dedicated their all-star game this year to Bob Ferretti.
Jeremy Marlar leaves legacy of faith, courage Jeremy Marlar, 24, a tenacious former Manatee, Florida High School football player who was diagnosed nearly three years ago with synovial cell sarcoma died recently due to complications related to the disease. Marlar, a 2001 graduate of Manatee High School known as a rugged offensive lineman on the football field, was diagnosed in January 2004 . Marlar, whose mother died of cancer when he was 9, vowed to beat the disease and spent months in therapy. His younger brother, Ryan, donated his stem cells to Jeremy, and the pair were the first people to participate in a clinical trial aimed at stemming the disease, according to his stepmother. "Jeremy was a true hero," Martha Marlar said. "He was courageous, intelligent, funny -- a wonderful, wonderful person. It was his faith in the Lord that kept him strong." On the football field, Marlar was the ultimate team player, former coaches said. Whether it was lining up for special teams, switching between guard and tackle or staying late for extra reps, Marlar was a regular for the Manatee High Hurricanes. When Manatee coach Joe Kinnan saw Marlar last year in Gainesville, the thick lineman's physique had withered, but his spirit had not. "Awesome kid," Kinnan said. "It's such a tragedy when someone dies young, but he fought it the whole way." Said Steve Peebles, the Hurricanes' offensive line coach: "I'll tell you this, Jeremy is somebody you want on your team. He'd do anything you asked of him, always put the team before himself, always played hard. He was the total package, not only as a football player, but as a young man." Marlar is also survived by his father, Jerry, and sister, Kelli Walker.
Sam Safken Scholarship Established Sam Safken’s fight against cancer has ended, but a scholarship in his name has been established to carry on his legacy. Safken’s mother, Linda Mulleady, his high school football coach, Bill Moore, and his friend’s father, Hal Heath, established the Sam Safken Memorial Scholarship Fund. Each year, a Fruita Monument High School offensive or defensive lineman deemed as having the biggest heart, will receive the scholarship to attend a Colorado college or university. Safken’s No. 54 Fruita Monument football jersey will be retired at the Wildcats final home football game this season, Oct. 27 against Montbello. Safken, 21, died Sept. 19 after a 15-month battle with Ewing’s sarcoma. “People say ‘what can we do?’” said Heath, who operates Metro Brokers. “Besides helping Sam and his family, we can spread good will. “Hopefully we’ll turn this into a golf tournament each fall with his 2004 classmates taking it over. I see it as a reunion for that class.” The golf tournament date and course have not been determined. Safken was attending the University of Northern Colorado on a football and wrestling scholarship when he was diagnosed. He was an all-conference offensive and defensive lineman in football, a state heavyweight champion in wrestling and a straight-A student. He graduated from Fruita Monument in 2004.
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