|
|
              
 |
Stories of Courage & Hope Annotations by Tom Swartz
In this issue's column:
Cancer Battle of Sister Inspires Vanderbilt Catcher’s Outlook Sometimes those big signing bonuses tend to make people forget that it's a game. Often, the unrelenting pressure on student-athletes chasing those bonuses alters the perspective enough that people lose sight of their relative youth. Everything might be different for Vanderbilt catcher Shea Robin had his younger sister, Shelby, not lost her left leg to Ewing’s sarcoma. Perhaps he would have stewed over every strikeout. Maybe he would have let the hard times overcome his enjoyment of playing. Were it not for the inspiration his sister provided, Robin could have placed too much emphasis on competition. "She could have looked at it to where she failed life because she ended up having cancer as a kid, the so-called best time of your life," Robin said. "But she completely turned it around and made it where she was succeeding, and she succeeds at everything she does now. I could not have handled it nearly as well as she did. Absolutely not. Me knowing that speaks volumes to me, just knowing that I could not have done near what she did." On February 9th, Robin will play in the Houston College Classic at Minute Maid Park along with old high school teammates. Other college teams in the field are Houston, Texas A&M, Baylor and Arizona State. Robin will take the showdown in stride. His life changed when Shelby was diagnosed with Ewing’s sarcoma at age 12. Robin and his sister were drawing closer to one another before she broke her left heel following a fall suffered while riding a horse. A few months later, her left leg was amputated just below the knee. "Seeing her have to go through that was not easy for me, but she made it a lot easier on all of us," Robin said. "She had a lot to do with how we handled it. The entire time she had cancer she cried once, and it was when she found out she was going to lose her leg. She set it from day one where she was going to be upbeat about it and she was going to turn it into a positive. She looked at it where God has a reason for everything, so there was going to be a reason for her to have it, and it wasn't going to be a negative reason." Shelby, now a freshman at Texas, triumphed over her loss. She was fitted with a prosthetic six months after her amputation, and resumed cheerleading competition. She became the first Sunshine Kids National Spokes Kid. She championed the cause of cancer-stricken children and became an inspiration for many more besides her brother. "If I had problems in my life, it put it in perspective that the problems I had weren't anything," Robin said. "Those were small problems that anybody is going to have to deal with throughout life. When my sister as a 12-year-old loses a leg and has cancer, that's what problems are. Anytime I did have problems I looked at it that way, and it helped me get through the problems a lot quicker, and it helped me mature in almost every aspect." Robin showed that maturity on the playing field where, thanks to Shelby — whose cancer has been in remission for several years — a proper perspective took shape. His high school teammates, who were familiar with Shelby, were impressed by Robin's ability to find an escape and joy in baseball. "He always came and did his thing and enjoyed it," high school teammate Lehmann said. "He was always upbeat around the team. I'm sure there were days he wasn't feeling great about it, but he was always there. I didn't see any dramatic changes in him, which is pretty impressive." Added another high school teammate, "He's a strong kid, not only physically but emotionally. To have to deal with something like that, that gains respect from your teammates and peers. He definitely gained my respect, not only as a friend but as a teammate." Those old teammates meet again on February 9th, this time on opposite sides of the diamond. Robin, at least, will take it as the game it is.
Sarcoma Survivor O'Brien Has New Goal at Shootout Seth O'Brien will be walking up to light the torch to start the Coldwell Banker Shootout Soccer Olympics on January 19th at Fort Lowell Park, Tucson, Az. It sounds like a few easy steps for a 24-year-old, but this will be a big leap in a journey back to a normal life for O'Brien. His left leg was amputated below the knee Sept. 5 to stop the spread of synovial cell sarcoma, a rare but very aggressive cancer that started in his foot. "When I heard the diagnosis on August 22, right away all the little things were not a big deal,'' O'Brien said. "It sounds so cliché, but getting caught up in the day-to-day (things) didn't matter anymore.'' Chemotherapy was next, and it took his hair, strength and finally his voice. "My voice didn't even sound like me for awhile there, it would crack like I was going through puberty again," he said. That was quite a blow because O'Brien has worked as a disc jockey at KRQQ-FM since 2002. He is scheduled to be back hosting the night show by Feb. 1. He'll also once again be the voice of the Shootout, announcing the entrants in the Parade of Teams. It's his third straight year in that role. It will be another chance to test his strength since finishing chemo in late December. "It will be a little nerve-racking to be out in public again," he said. "I hope it's a big marker for me getting back to a normal, daily routine." He is making progress with his prosthesis and hopes to resume all normal activity. O'Brien played in the Shootout from 1992-95 and remembers the fun atmosphere. "As a kid, it seemed like a carnival,'' he said. "We got to play against teams from all over. It was always a lot of fun." O'Brien was also a kicker for the Sabino High School football team and graduated from the school in 2000. "That's a challenge my brother, Eric, has for me. Once I'm used to my prosthesis, we want to try to see if I can still kick a field goal,'' O'Brien said. His mother, Lynne O'Brien, said the appearance at the Shootout will be a milestone for her son. "He doesn't talk about it, but 1 in 3 people die from the kind of cancer he had," she said. "I'm glad he's doing this. It's like his christening back into life."
Still Standing Through Cancer and Painful Leg Surgeries The Haslett basketball team is working on its half-court offense, and senior Danny Wiseman is standing near mid-court with a ball in his hands. When the team begins to scrimmage full-court, he moves to the sideline and watches, with a ball in his hands. He watches as players race up and down the court, because that is all he can do. Stand and watch. But then the team breaks up, two to a basket, and begins a shooting drill. That is when Wiseman finds a partner and begins sinking shot after shot. "He's our best shooter," senior guard Zach Wakulsky said. "He's got a raw talent to shoot." Wiseman's shooting form is anything but textbook. He shoots off his left foot because his left leg is two inches longer than his right one. His right shoe has a two-inch platform on the sole to try to even his legs, but he walks with a noticeable limp. "If he was able to go, he'd be our best player," said coach Rob Porritt. "But he doesn't have the gait to get up and down the court." By all rights, Wiseman's shooting form should result in air ball after air ball. He is off balance on every shot he takes.
But so many of his shots go in. His proficiency comes from hours of practice. "I like all sports, but basketball is something I can do by myself," Wiseman said. "I can go shoot by myself in the gym, in my driveway, in a park.” At one of my houses, I didn't even have a hoop, but I'd go out and dribble up and down the street forever and ever. It took my mind off everything." Basketball became Wiseman's escape. Whenever he felt overwhelmed by an upcoming surgery, he would grab a ball, find a hoop and begin shooting until he became lost in the repetitiveness of shooting. And there were so many times he felt overwhelmed. Wiseman was only a 6-year-old in December 1994, when he first complained of pains in his right leg. The family doctor said it was probably nothing more than growing pains. But when it persisted, Wiseman's parents, Merry Achors and John Wiseman, took him to Children's Hospital in Detroit. The diagnosis was Ewing's sarcoma, a cancer typically found in boys 16 to 24 years old. In June '95, Wiseman's right femur was removed and was replaced by a donor bone. "They told us the chance of survival was 50%," Merry said. "They said if they found cancer anywhere else, it dropped to 15%. They found a spot on his lung." Wiseman underwent months of radiation for his right lung and chemotherapy for his femur. When he contracted a bone infection, he had IV treatments at home for a year and was on antibiotics for 2 1/2 years. "One time, six months after this started, he asked if he was going to die," his mother said. "We always did these visualization things. We visualized the Power Rangers going down his arm and into his chest, chewing up all the cancer." Whether it was the superpowers of the Power Rangers or simply the effects of chemotherapy and radiation, Wiseman eventually was cancer free and has remained that way. Also gone are some of the memories of what was an agonizing time in his life. "I don't remember a lot of the specifics," he said. "I remember going through treatment and the days I got to come home from the hospital and be with my family. I don't necessarily remember everything, but there are things I remember. I try to remember the good parts, but there weren't a ton of good parts. I try to stay positive." That is the type of attitude Wiseman has maintained through the cancer and the ensuing operations. That is how Wiseman has been able to survive all 29 surgeries. That's right, 29. There were surgeries to replace the femur and to replace the replaced femur. There were surgeries to replace his hip (twice) and then to remove the second replacement hip and fuse his femur to his pelvis. There were surgeries to shorten the left leg -- which took him from 6-foot-2 to 6-foot -- and to lengthen the right leg. There were knee surgeries and another to loosen tendons in his right ankle after the surgery to lengthen his right foot. Through it all, Wiseman's main goal was to play basketball. "Danny liked all sports, but basketball was something he can't get enough of," said his father, who coaches freshman basketball teams. "He had his own way of running. In the half-court, he learned how to cheat -- how to shorten the court." All of that paid off when Wiseman tried out for his school's team in the eighth grade. His season lasted one day. As the players took off to run their first sprint, Wiseman's femur cracked in half. "It just broke right in half -- clean; it was completely detached," he said. "I tried to get up and I couldn't. My leg just stayed there. I couldn't get up." That led to another surgery and Wiseman being placed in traction. According to doctors, it was the end of his basketball career. As a sophomore, Wiseman sat on the bench with teammates as Haslett advanced to the Class B semifinals. He was trying to recover from a leg-lengthening surgery performed at the International Center for Limb Lengthening at Baltimore's Sinai Hospital. Actually, the surgery was nothing compared to the excruciating recovery process. "They put 21 pins through his leg, in one side and out the other, with these nuts and bolts attached," his mother said. "They broke the bones in two places, and before the bones could grow together, we would have to turn these screws four times a day so the bones never got attached. It was nerve-racking. I had to turn them an exact amount. The bolts got so hard to turn I had to use a wrench." Wiseman was shocked when he awoke from surgery and saw his right leg encased in wires and protected by a halo. Then came the grueling process of tightening the screws. The pain was so bad he could barely eat, and his weight dropped to 114 pounds.
"Right at first it would hurt real bad because it would stretch really tight," he said. "Then it would kind of die out for a little bit. But right at the end, when I was getting the last little bit of length, that was probably the most painful. Everything was stretched so tight -- the muscles, the skin. It was hard." His parents still don't know how their son endured the pain. As soon as the contraption was removed from his right leg, Wiseman began rehabbing so he could walk. It also led him and friend Courtney Rodgers to the gym, where Rodgers rebounded as Wiseman learned to shoot again. "Once school got out, I was in the gym, literally, for three or four hours, shooting shots and shots and shots," he said. "My friend would rebound for me. I shot a million shots a day, even though I knew I was going to have a surgery in October to shorten my leg." That surgery -- to his left leg -- kept Wiseman out for the first eight games of his junior season. Wiseman was still very much a part of the team, and Porritt first got him into a game against Charlotte, and he made a free throw. Later, he played against Corunna and missed a three-point shot. "That was pretty frustrating for me because I'm as competitive as they come," Wiseman said. "After that game, I told everybody if I get another chance to get in -- I didn't know if I would because I wasn't expecting anything -- I'll make it." That chance came against Williamston, and he nailed a three-point shot. "He buried it," Wakulsky said. "The crowd went nuts, and Coach Porritt just fell to his knees. Most people would quit after everything he's been through. But that's not his personality to quit something. He loves basketball so much." That love is evident every day Wiseman shows up for practice. He is the first one in the gym and the last to leave, shooting shots long after his teammates are gone. "I'll always have a spot for Danny on the team," Porritt said. "He motivates the coaches, the students, the players. Nobody can quit on a game or give up on a lay-up. He's always upbeat and never complains about anything in his life." Haslett was 24-2 in each of the past two seasons, so there was ample opportunity to get Wiseman into games during blowouts. This team (3-5) has only three seniors, including Wiseman, so games are closer and Wiseman hasn't played much. But he did hit a three-point shot against Grand Rapids Central and added a lay-up against Williamston. Still, he is at every practice, doing all he can to be ready, just in case. "I still work hard, I'm trying to jog," he said. "I realize that if I can't get back, I've got to do other things to help the team -- like be a leader on the bench, get guys going. If I can't do something on the court, I have to do something off the court. "I try to lead by example." In a few months, Wiseman's high school days will be over. He plans on attending Lansing Community College for a year and then transferring to either Georgia or Michigan State to enroll in a turf management program. But before that, there is at least one more surgery, another on his right leg to lengthen it again. "It's in the femur; they'll put a rod down the bone," he said. "It will all be internal. That's going to be really nice compared to the other thing. There's a nail in it and somehow you jiggle your leg a weird way and that lengthens it somehow." At least there won't be the screw-turning torture he endured the last time the leg was lengthened. "Pain isn't really a factor anymore, to be honest," he said. "I've got to do it. If this is going to make my lifestyle better and easier, why not? I've been through a lot of pain, and I always think about how it can't be much worse than that." Dangling from Wiseman's wrist is a yellow LiveStrong band. It supports a foundation begun by cyclist Lance Armstrong to help fight cancer, a disease he overcame. "Lance Armstrong is just an animal," Wiseman said with a grin. "He's a freak athlete -- his work ethic and stuff. Anytime there's a story on him, I like to read it because he's amazing." People can say the same thing about Danny Wiseman.
Young Cancer Patient Left Lasting Legacy As he spent the last two years of his life battling bone cancer, A.J. Donahue spent a lot of time in the oncology ward at Jacksonville Florida’s Wolfson Children's Hospital. The teenager developed some very clear ideas about how things could be improved, said Greg Norton, a Wolfson oncology nurse. "He was very concerned about keeping mama comfortable. And he would have liked more entertainment. That's what we're going to talk about today," Norton said. As Norton spoke, Bill and Terrilyn Donahue, A.J.'s parents, walked the halls of Wolfson, a place filled with memories both good and bad. The Donahues had come from Brunswick for the afternoon to discuss with Larry Freeman, Wolfson's administrator, how to spend $76,000, A.J.'s lasting legacy to Wolfson. The Georgia boy was a 16-year-old student at Brunwick's Glynn Academy in October 2004, when doctors discovered a tumorous mass on his right arm. He was diagnosed with osteogenic sarcoma. He was hospitalized at Wolfson where he underwent chemotherapy and had his diseased humerus bone replaced with a titanium rod. After five months of remission, routine tests found a cancerous lesion on one of his lungs. That was surgically removed and he underwent another round of chemotherapy, lasting five months. But last January, another spot was found on his lung. He decided against more chemotherapy. Then in August, he began a fundraising campaign. A.J. had always dreamed of flying. His flight instructor designed a logo, a drawing of a biplane being piloted by A.J., his scarf blowing in the wind. Inscribed on the plane's fuselage was AJD912, short for ajdonahue912, the code for accessing A.J.'s CarePages Web site. CarePages is an online social network for people battling illness. A.J. launched a fundraising campaign via his Web site, offering stickers with his logo for a $2 donation. "It just took off," Bill Donahue said. A.J.'s reaction? "I guess we should have gone for more than $2," he told his father. A.J. set a seemingly preposterous fundraising goal of $50,000. He shattered that six weeks after the campaign started, having drawn donations from most states and dozens of foreign countries. The goal was reached on a Thursday, Norton remembered. Two days later, on Saturday, Sept. 23, A.J. died at the age of 18. Even after his death, stickers and T-shirts bearing A.J.'s logo continued to sell. To date $76,000 has been raised. His highest priority for improving life on Wolfson's oncology floor was buying reclining chairs for the parents who end up spending long hours in the rooms, often sleeping on benches, Norton said. But Freeman, the hospital's administrator, has already pledged to pay for the recliners out of his budget. Based on conversations with A.J., Norton gave the Donahues a wish list of ideas, like CD players, DVD players and portable video game systems for every room. He also suggested that each room be equipped with a small light, so parents could read while their children slept at night. The bulk of the money will probably go to nursing scholarships, Bill Donahue said. Would A.J. approve of that list? His mother considered the question: "He would probably wish he could tell you exactly how to spend it."
Here is a real life story of a 15 year old that is willing to take time off her busy schedule to support the Cansa Shavathon, which is taking place on Saturday 3rd March. After loosing her leg to cancer, her life took a turn, a turn to success in swimming and academics, this is a story of a true survivor and one who shows she cares. The Cansa Shavathon, Cansa's (the Cancer Association of South Africa) biggest fundraiser, is just a few weeks away when South Africans get the chance to unite and shave, for the fight against this deadly disease. Emily Gray, 15, is one of those 1 in 4 South Africans affected by cancer, and her eyes still sparkle, yet not as much as her future does. At the young age of just 11, Emily was diagnosed with osteosarcoma of the left femur in December 2002. As a life sparing procedure, Emily had a through the hip amputation of her left leg at the end of February 2003. Emily was discharged from ICU and underwent subsequent chemotherapy treatment. Emily was discharged from hospital in May 2003. Prior to Emily's diagnosis and treatment Emily participated in various sports including hiking, she also did a little rock climbing, practiced Kung Fu, played netball, participated in cycle races and was showing promise as a young middle distance runner (1500m). Despite the initial devastating realization of the effects that the cancer and the treatment would have on these sports, Emily's family examined all sorts of alternative sporting activities that Emily's treatment would allow her to participate in, these included wheel chair basketball, archery and swimming. Swimming was the one, and Emily started swimming in June 2003 at Mandeville (the disabled sports club in Johannesburg). Emily had to start from scratch, she could keep herself from drowning yet she had to learn how to swim with her disability. She currently trains with the swimming club Wahoo in Johannesburg. By the following year 2004 she was participating in the SA Games and by 2005 in the SA Senior Nationals. She has swum with SA teams in Sheffield UK, Rio de Janeiro Brazil and in the SA schools team in Melbourne Australia. At the age of 15 and within 3.5 years of learning how to swim she was selected for the SA team to swim in the International Paralympics Committee World games in November 2006 where she significantly improved her times and made it into the final of the 100m back stroke event, coming 4th. Emily currently has one qualifying standard for the Paralympics and would hope to achieve at least another 2 before the targeted aim of Beijing in 2008. Outside of the sporting arena she is currently doing O levels at Greenwich College and looks forward to a University career. She has happily volunteered her help CANSA (The Cancer Association of South Africa) to help uplift those less fortunate and show that life is what you make of it. Emily's quote: "nothing happens in life that's ultimately detrimental". This young lady seems set to take the world by storm with her swimming achievements, and simply a motivation to keep on swimming through life no matter how big life's waves are. Emily is an inspiration to those that read about her or meet her and she shows that no matter how much adversity life has, one needs to keep smiling and keep on going.
Street Renamed for an 'Inspiration' Nineteen-year-old Karl Feldman never got to be the president of an electric company, a cobbler or an undercover detective -- some of the professions of other Staten Islanders who were honored with street renamings this year. But the late Bulls Head cancer victim was the recipient of the special form of remembrance yesterday, according to his parents, for being the most important thing a dying teenager surrounded by a ward of sick children could be: An inspiration. "He was always there to support the other patients at NYU even though his condition was so serious," said his mother, Hinda Feldman, a longtime public school educator. "If you knew Karl, you knew that he had that self determination, the personality that wouldn't give up." Karl was diagnosed with Ewing's sarcoma a day or two after his 13th birthday. He would spend the next six-and-a-half years of his life undergoing intense treatment at New York University Medical Center, until he died Nov. 5, 2003. "I think only once in the six-and-a-half years he told me that he was scared," said his father, Jerry Feldman. "He wasn't afraid of dying -- he was just afraid of leaving everybody behind." Karl had been a student at PS 60 in Graniteville and at Paulo Intermediate School in Huguenot prior to his diagnosis. Afterward, his main activities were using computers and, when he felt well enough, fishing -- something he had enjoyed since "he was old enough to hold a rod," according to his father. Otherwise, he spent his time encouraging other sick children, and even the hospital staff, with his positive demeanor. His parents recalled how he once managed to convince a stubborn child who was tired of undergoing chemotherapy that he needed to stick with it. "I'm not gonna be here much longer and you're gonna have to take over from me to encourage the other kids," he told the patient, according to his father. The motivation worked. About a year before he passed away, Karl wrote his father a letter consisting of several paragraphs followed by a list of instructions for after he died. One of the instructions was that when his dad went fishing, he had to make sure to bring Karl's fishing rod along. To his father, the message was clear: Don't forget me. Standing on Longdale Street yesterday afternoon, Jerry Feldman gestured toward the newly unveiled street sign beneath it, Karl Feldman Way. "This is another way of not forgetting him," he said.
Sarcoma Storyline on Display at Houston Marathon On an early Sunday morning, they'll all wake up. The ones running to stay in shape, the ones running because it's therapeutic, those running to honor another and those just trying to set personal records. And they'll all start out at 7 a.m. with 26 miles of Houston ahead of them. The Chevron Houston Marathon is set for February 11th. One of the runners will be doing so to remember a friend. Kevin Kline, radio personality for KKBQ, 93Q Country, has never run a marathon in his life. But he's trained for 16 weeks for the marathon and has a lofty goal of 3:45. In the past months, he's felt pain in trying to get into marathon shape. That pain is in honor of a 16-year-old Santa Fe High School student whom Kline watched suffer with undifferentiated sarcoma for 11 months. The cancer affects about 50 people in the world a year. In December of 2005, Kline met Chelsey Campbell, who was just 15 at the time, at a radiothon the station was having for Texas Children's Hospital. Campbell had been diagnosed a couple months earlier and was receiving treatment at the hospital. Campbell and Kline became great friends in the year following. He said he saw her just about every other day. “She's had quite an impact on my life,” Kline said. “She had a really positive attitude and when she was told that only one in 10 people survive this condition, she stood up and said, 'I will be that one.” Campbell had a record-setting 28-hour marathon surgery that removed 95 percent of her tumors. Only two remained because they were in an inoperable location. But her condition eventually worsened as the tumors returned. On Dec. 9, 2006, Campbell passed away. Kline had been with Campbell for much of the time she suffered, and recalled her vomiting on 41 consecutive days during one stretch. Kline made a promise to run the Chevron Houston Marathon in honor of Campbell. People can donate money to sponsor Kline's run in order to raise funds for the Snowdrop Foundation. Kline and his wife Trish founded Snowdrop Foundation, which assists patients and families at Texas Children's Hospital through funding research to eliminate childhood cancer. It also funds scholarships for college-bound pediatric cancer patients and survivors. Campbell's influence on Kline will be felt by many children who suffer from cancer for years to come. Her parents asked Kline to be a pallbearer at their daughter's funeral. “She said to her parents, 'I'd rather live with this pain than ever leave you,” Kline said of the girl who, after making this statement, would soon see her condition worsen to the point that she could no longer communicate. When the sting of running 26 miles starts catching up with Kline on February 11th, one can bet he'll just smile and keep pushing on. “I told her, to honor the pain you've gone through, I'll put myself through some,” Kline said. “I just want to make her proud.” Kline did make her proud as he finished the marathon in 3:44:56. Kline is now set to run his second marathon on February 18th – the AT&T Austin Marathon.
11 Year Old Sarcoma Survivor Raises Money to Remember Friend and Help Others Young cancer sufferers will be able to holiday at a specially equipped luxury caravan bought in memory of a Felixstowe, UK boy - after a heart-melting plea on TV by one of the youngster's friends. Liam Fairhurst gave a deeply emotional pitch to win £50,000 from the panel of five millionaires on the new ITV show Fortune: Million Pound Giveaway. The 11-year-old, who has been treated over the past year for synovial sarcoma in his left leg, told the panel he wanted to set up the holiday home in memory of his friend Jack Wilkinson, who died aged 12 in August after a long battle against bladder cancer. The two boys met and became firm friends while undergoing treatment for their illnesses at Addenbrooke's Hospital in Cambridge. Jack's mother Caz Wilkinson said, “Jack had always wanted to help other people, too, and raised money for the children's hospice and Macmillan Nurses. In my heart, I know Jack would have been thrilled to bits to think Liam was fundraising in his name. It is devastating for us to have lost our son but the fact that people want to remember his spirit in this way is absolutely fantastic.” Liam's dad Mark Fairhurst said, “Appearing on this show has been the icing on the cake for Liam who has personally worked hard to raise over £13,000 for CLIC Sargent since his friend Jack lost his battle with cancer. Jack's death has been devastating for Liam and at least now he has something tangible in his memory.” Liam has undergone four operations, seven courses of chemotherapy and 32 blasts of radiotherapy to treat the synovial sarcoma in his left leg. He has been fundraising for the past few months for the holiday home. The money awarded by the panel will help fund the three bed room, fully equipped, luxury caravan in Filey, Yorkshire, for five years. It will be used by 30 families a year. Len Collingwood, holiday services manager for CLIC Sargent said, “We are so grateful to Liam, because of his courage and determination many more children with cancer and their families will benefit.”
Fund Raiser Helps Raise $45,000 for 6-year-old Sarcoma Patient A little boy from Latham, NY battling sarcoma has received a huge boost from the community. During a fundraising dinner at Carrabba's Italian Grill, 1,700 dinners were served, raising $45,000 to help 6-year-old Benjamin Stowell and his family with medical bills. Ben and his family accepted the huge check, which Tad Nix from Carrabba's said was the largest check he has ever signed. In September of last year, Ben was diagnosed with stage two osteogenic sarcoma, which is a malignant bone tumor. As a result, he has undergone high doses of chemotherapy. Both Carrabba's and Ben's father were overwhelmed with the amount of support. "It's the best feeling. Carrabba's as a whole, this is what we like to do, and it is a no-brainer, especially when it's for such a great cause," Tad Nix said. "To know that that many people really have that much love in their hearts and are truly praying and supporting our family is really amazing. It's like living the end of It's A Wonderful Life," Ben's father Tim Stowell said.
Cancer Can't Banish Teen's Brave Spirit Wearing a blue rosary beneath his gray T-shirt with an Aurora Police Department logo, Miguel Pedro struggled to sit up in his hospital bed at Children's Hospital. The 19-year-old reached for his new police hat, still in its bag, and enthusiastically tried it on. His handcuffs, police badge and uniform patches were on his lap. When he was certified as an Aurora police officer Thursday, he read everyone their Miranda rights and handcuffed his doctor, Tim Garrington. "This is a dream come true," Pedro said. Why a police officer? "To keep the community safe," he said. "Just to keep crooks out . . . to sneak up on them and catch them." Last week was a whirlwind for the teenager. Pedro, who was diagnosed with osteogenic sarcoma, was awarded an honorary high school diploma from Denver Public Schools on January 26th. And he was told by doctors that he has from several days to several weeks to live. On January 29th, James Seneca, an Aurora police officer who runs Cops Fighting Cancer, brought him a carrot cake to celebrate his badge and his diploma. "We're on the same team now," Seneca told the teen. Pedro replied, "I'm going to partner up with Seneca and keep the streets safe. I'll be his backup." Seneca said Pedro has the spirit of a fighter who doesn't give up. In August 1987, Seneca himself was diagnosed with leukemia and underwent grueling chemotherapy sessions. In 2003, he created the nonprofit and raised $250,000 to help others. He said 90 percent of the funds go directly to pay for families' most pressing needs, such as money for food, clothes, mortgage and car payments. "I call it divine intervention," he said, adding that the organization has helped 50 families in Colorado with money and emotional support. Pedro's mother, Maria Salcedo, 39, said "this has brought a lot of happiness" to her oldest son. "It's something that was very important to him and very special to all of us," she said in the hospital room. For Pedro, receiving an honorary diploma sends a positive message to his younger siblings and other teens. "Never quit school," he said. "You're never going to regret it." Garrington said Pedro underwent chemotherapy in November for the tumor on his pelvis. But it didn't shrink. In late January, Pedro was admitted to the hospital. The tumor had rapidly progressed. Instead of undergoing surgery that likely would cause him to lose a kidney and a leg, "he chose to enjoy whatever time he had left," Garrington said.
A week after Sabeen Khan turned 16, she got what she calls "a huge reality check." Sabeen was diagnosed with osteogenic sarcoma, with a tumor about the size of a softball in her pelvic bone. "I'm a clutso. I thought I had just pulled a muscle or something," Sabeen said of the pain she experienced for months before the January 2006 diagnosis. "But when the limping wouldn't go away, I got an MRI done." A biopsy confirmed the cancer, and Sabeen started chemotherapy. The next step in the protocol was surgery to remove the tumor. Because of the rare location of Sabeen's tumor, surgery meant the amputation of her left leg, all the way to her hip, as well as part of her pelvis and part of her sacrum, the lower part of her backbone. "There was not a guarantee you could get the whole thing out," said Dr. Ray C. Pais, director of pediatric oncology at East Tennessee Children's Hospital. Still, Sabeen's chances of survival would have increased from zero to about 40 percent. Sabeen was faced with the biggest decision of her young life: quality of life or quantity? But for Sabeen and her parents - Mujeeb, a geriatric psychiatrist, and Zeb, a stay-at-home mom to Sabeen and her two younger sisters - there wasn't any question. They decided against the amputation. "The surgery would have been so radical, so mutilating, that we didn't struggle (with the decision) at all," Mujeeb Khan said. "You have to have faith in God." Sabeen put on a brave face. "I figured moping around won't change it, so I might as well get over it and deal with it," she said. "This made me realize how much I am taking for granted and how I need to step it up: I need to pray. I need to get out of all the pointless goals I have and do something meaningful." Sabeen also took her diagnosis as an opportunity to be an example. "I'm a Muslim, and with the way people portray us, I wanted to show that I'm normal," she said. "That I'm a good person and that Muslim people are good." "So uplifting" to the family was the response from the community, from the neighbors, from Sabeen's school from people the Khans didn't even know. "We heard they were saying prayers and rosaries in the churches," Mujeeb Khan said. "From different faiths, from different parts of the world - anyone who knew (about Sabeen) was praying, and that helped her significantly."
Family friend Sadia Amer was searching the Internet for alternative treatments when she found information about the University of Texas M.D. Anderson Cancer Center in Houston, which had just opened its Proton Therapy Center in April. In August Sabeen became the Proton Therapy Center's first pediatric patient. "It really was a miracle," Sabeen said. "Oh my goodness, I am so blessed to have the option of trying something new that so many people don't even know exists." In traditional radiation therapy, X-ray beams, also called photons, go through the body and affect everything in their path, according to a Proton Therapy Center brochure. Physicians must limit the radiation dose delivered to the tumor to minimize the damage to surrounding healthy tissue. Protons, however, allow physicians to direct highly targeted radiation to match the shape of a tumor while sparing nearby healthy tissue. This makes protons the preferred form of radiation therapy for children, whose growing bodies are extremely sensitive to the effects of radiation. For Sabeen, proton therapy required her to lie perfectly still for 30 minutes a day, five days a week, for seven weeks of treatment. She had no pain from the treatment, only something similar to "a bad sunburn," she said. When Sabeen returned home the pain in her hip became so great that she was in intensive care four times in December. Her family scheduled another trip to M.D. Anderson, where, on Dec. 20, they were given the news: The tumor is inactive. "I asked my dad after (the doctor) went out to get the scans, 'So does that mean it's dead?'" Sabeen remembered. "It took me so long for it to sink in." "It was nothing short of a miracle," Mujeeb Khan said. The pain, it turns out, was a sign that the tumor was dying.
Dr. Peter Anderson, the consulting oncologist at M.D. Anderson, said he had "cautious optimism for a bad tumor in a bad place," but that he also expected results. "Radiation, contrary to dogma, is effective (in treating osteosarcoma). We have known that since the '90s," he said. "It has worked, and as long as the scans stay this way, we have a good chance of beating it." That doesn't mean that Sabeen is cured. She will continue to undergo chemotherapy, both orally and through IV for four more months, and she must have regular scans to see if the cancer has spread, as four out of five cases recur in the lungs, Anderson said. She will go back to M.D. Anderson for a check-up in May. "There is still a decent chance the cancer could come back, but at least now we are talking about the possibility that she could be cured," Pais of Children's said. As Sabeen approaches her 17th birthday on January 21st, she continues to have pain but is using a patient-controlled access pump to deliver a continuous infusion of pain medication into an IV in her arm. She is hoping, though, to be able to finish her junior year in high school with a full load of classes this semester. "I think, ultimately, you start enjoying the moment more," Mujeeb Khan said. "The small things in life that you took for granted mean so much more now." "Like school," Sabeen interrupted, laughing. "I miss school. Now I love going to school." And that, for a 16-year-old, is a real reality check. For more on M.D. Anderson Cancer Center’s Proton Therapy Center click here.
"American Idol" Finalist and Sarcoma Advocate to Join Fantasticks Revival Anthony Fedorov, who was a finalist during the fourth season of FOX's "American Idol," will join the Off-Broadway cast of The Fantasticks on May 1. Following the death of his brother Denis, Fedorov has also become an advocate for the Sarcoma Foundation of America. Fedorov will step into the role of Matt in the classic musical, which plays the Snapple Theater Center, New York City. After his appearance on "American Idol," singer Anthony Fedorov took part in the 2005 "American Idol Summer Tour," playing in 44 cities. He appeared as a celebrity judge on "MTV's Little Talent Show Triple Threat" and as a celebrity contestant on "Fear Factor." He is currently working on a solo recording. Harvey Schmidt and Tom Jones' The Fantasticks, according to press notes, "tells the story of a young boy and girl who fall madly in love at the hands of their meddling fathers, but soon grow restless and stray from one another. Will their separation provide a deeper appreciation for the love they once shared or create a permanent gulf between them?" Song titles include "Try to Remember," "Much More" and "I Can See It."
V4N1 ESUN Copyright © 2007 Liddy Shriver Sarcoma Initiative. |
When
Maddison (Maddie) was born she was considered a gift to her
parents, as her father was terminally ill with ALS (Lou
Gehrig's Disease). Stephen defied the odds and lived till
she was 6 years old. During those 6 years, Maddison taught
us so much and at such a young age as she cared for her
father and she had a way to make her friends comfortable
around him. She would feed him, get things for him and make
him laugh. Maddie was featured in a MS Telethon story with
her dad and she raided her piggybank to give to that
telethon, (age 4, her first act of philanthropy). She
inspired a song written and recorded about her and her
affect on her dad’s quality of life by her father’s nurse.
She also had to care for her little brother while bravely
managing her own childhood. Maddie continued to support
local school events (skip rope, read-a-thon, etc.) and she
always participated in the yearly ALS walk raising funds and
awareness for ALS 
