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Stories of Courage & Hope
Annotations by Tom Swartz
In this issue's column:
Cancer survivor back to being a marathon manOnce he crossed the finish line of the New York City Marathon, Ted Pernicano could finally relax. His time of 3 hours and 23 minutes had qualified him for Boston, meaning that months of pain and uncertainty had paid off and, in at least one regard, he could consider himself whole again. As glad as he might have been, there was a whole group of runners standing behind him, cheering for his victory. Members of the Taconic Road Runners (TRR), a running club that hosts weekly runs in Yorktown, Croton-on-Hudson and Cortlandt, New York were a big part of Pernicano's comeback. "I think all of us who have been aware of what Ted's been through for the last few years, it was very gratifying to see how well he did," said Karen Davies, a member of TRR. In 2004, Pernicano was diagnosed with a cancerous tumor in his back, called a chordoma. He needed surgery at Memorial Sloan-Kettering Cancer Center to remove his coccyx and three sacral vertebrae, a process that raised many uncertainties for Pernicano and his wife, Karol, and their two daughters, Gina and Diana. "I was a little concerned going into the operation," said Pernicano, 48. "I didn't know how much of my spine (the surgeon) was going to remove. I didn't know how I was going to come out and what my limitations would be." His recovery was difficult. Pernicano couldn't run at first, but friends through the Taconic Road Runners and other running clubs lifted his spirits. They visited him in the hospital, and later they stopped by his Yorktown Heights home to go for brief walks with him before he could run. "It was devastating for all of us," said Ernest Joseph, a friend and vice president of the Rockland Road Runners. "But for him, because of his running and how competitive he was, he thought it was the end of the world." Since running the New York City Marathon in 1999 after a 17-year break in competing, Pernicano each year had qualified for the Boston Marathon with his New York time. It was a streak he was proud of, and he wasn't ready to give it up. Since he had already qualified for the 2005 Boston Marathon before the operation, Pernicano ran it. Getting through the course was very difficult, and he walked for a good part of the way to finish in 4:45:00. Pernicano regrouped and ran New York later that year but broke the streak when his 3:55:00 failed to qualify him for Boston. For many people, completing two marathons in the wake of illness would have been a victory, but for Pernicano it heightened his sense of being a changed person. "I was just a little disappointed I was so far off the qualifying time," Pernicano said. He became depressed, particularly when his work situation changed and his physical improvement hit a plateau. "My recovery hit a point where it didn't improve," Pernicano said. "I realized my body would have to adjust to the pain." And that's what it did. He started attending the TRR speed workouts led by coach Jack Brennan. He began to improve his time and to figure out ways to get beyond new physical limitations. "I think that's the only way he could fight back," Joseph said. "It was the only way he could get through it." Pernicano focused on the things he had control over and listened to the encouragement of the runners he had come to know over the years. "Our club is very caring," Pernicano said. "We may not be the most elite club, but we're there for each other." His wife agreed. "They helped you through a very difficult time," she said. "They really helped you get back on track." When he ran this year in the New York City Marathon, Pernicano ran for a time with a woman wearing a Fred's Team shirt. Fred's Team was set up to benefit Sloan-Kettering in honor of former marathon director Fred Lebow, who died of cancer. The woman, who wore the name "Dee" on her shirt, was on a pace to finish in under 3:30:00, which was what Pernicano needed to start another streak and qualify for Boston. "I said, 'I need to get to Boston, Dee,' " Pernicano said. "She said, 'Don't worry, I'll get you there.' " Turns out Dee was one of the many fellow runners who helped Pernicano achieve that goal.
Lonely world of teenage patients Life was a whirlwind for David Ayling in his first term at university. He had left his home town for Stirling University in Scotland and was throwing himself into student life. He put his increasing tiredness down to the change in lifestyle and late-night parties. However, when temporary deafness and a sharp pain in his jaw became too much to bear he went to see his doctor. Within a week he was in the Beatson oncology centre in Glasgow, receiving chemotherapy for rhabdomyosarcoma, a cancer that affects soft muscle, is usually found in children under three. While the news is devastating at any age, there are specific problems for cancer sufferers in their teens. These include gaps in education at a time when their peers are gaining qualifications, body-image issues and being absent from school or college at a critical time in their social and personal development. CLIC Sargent, the UK's largest children's cancer charity, was formed last year from two existing charities to offer support for children, young people and their families. The charity provides a youth social worker and family support worker, access to support groups and a home away from home for families who have to travel far. Youth development officer Tracy Rodger says: "It's the social isolation which a lot of young people tell us about. They feel out of step with their peers and they are not able to keep up with the day-to-day gossip." Although he maintained a circle of friends, David was aware that they could not relate to his experiences of illness. "You do feel set apart from your friends. In the ward, having no-one my age to speak to did make the whole experience more traumatic." He says: "I was always quite dubious about going to groups when I was ill." Towards the end of his recovery, however, he began to participate. "The first time I went, I changed so much, I got my confidence back. Being around people who had been in the same situation meant you didn't need to explain yourself. It took me long enough to work up the courage to open myself up to a group but the benefits helped me vastly while I was in hospital. I wish I'd done it earlier. I've met some of my best friends through this." David is now rebuilding a life for himself; he now has a job in an outdoor-activity shop. One of the firm friends he made through CLIC Sargent group events was Kieran Reynolds. Kieran, 24, was diagnosed with a brain tumor at the age of eight and had been in and out of hospital for 13 years. He says his experience of cancer left him feeling completely isolated throughout his teenage years. "People in your class didn't understand you; they saw you as some kind of freak because I was the only one in the school with cancer," he says. By taking part in groups and activities organized by CLIC Sargent, Kieran was finally able to make friends and open up. "Until then, I just bottled everything up. It was so good to speak to people who totally understood." He now works for a phone company and hopes to open his own juice bar.
Physician competing in Ironman Triathlon not competing for himself It is daunting just looking out at it. Dr. Sam Agresta pointed out at Pier 60 on Clearwater Beach, Florida where some 2,000 athletes will battle through the water. He dipped down and touched the water, not too cold; he'll have on a wetsuit to stay warm. His bike is ready with spare tires, and his shoes are perfect for running. He's done this race before, but this time is different. Dr. Samuel Agresta is an assistant professor in sarcoma at the Moffitt Cancer Center. “In a previous life when I had time to train, I'd train 20-30 hours a week. A year ago, a race like this would have meant a lot to me as a person who loves triathlons, but it's not for me. I'm doing it for Andrea. ” Andrea Dicks Hartley was pregnant with her daughter when she felt numbness in her leg. It persisted after her daughter Emma was born, and she was diagnosed with clear cell sarcoma, a bone or soft tissue cancer. She fought to live so that her daughter would know her. And her friend—-her doctor—Dr. Sam Agresta, was with her during her 10 month fight. Andrea's mother says his compassion and dedication helped Andrea keep going. “She always wanted to do a race of some sort before she died, so I thought what would be more fitting than giving her my first Ironman medal. I don't think I could have done, in those terms, equal to what she did for her daughter. ” Andrea was just 30-years-old when she died. As Dr. Agresta—a friend, the doctor looked out at the route of the race, he admits it will be emotional. When he's on his bike, he'll look down between his armrest, there will be a picture of Andrea. And in the final moments of the 13.1-mile run, he'll pick up 2 1/2-year-old Emma and cross the finish line with her. “It's not to win, not to finish, but to get the medal and give it to Andrea's daughter Emma.” (Watch the "Video Story" on the website.)
This year Richard's gratitude is unending Just a few months back, Richard Blau and his parents were looking for reasons to hope. The 12-year-old Tucson, Arizona boy had osteosarcoma in his right leg and the best scenario doctors and the Blaus' insurance carrier could offer was to trade that leg for his life. Today, despite Richard's continuing fight against osteosarcoma, the family has reason to be thankful. Jeff and Rhonda Blau look at their son's young face, ashen and weary from ongoing chemotherapy treatment, and they see a child on the mend. "Doesn't he look good?" asks Rhonda Blau, 49. "He's got his leg. That's what matters." They look at the thin, 14-inch scar that runs down the front of that withered leg where the cancer once grew and they think of a long list of people to thank for giving them hope. There are the lawyers, Grace McIlvane and Stanley Feldman, who helped them appeal for insurance coverage for experimental treatment, and Aetna Health Inc. for providing it. They think of Dr. Manny Katsanis, a pediatric oncologist at University Medical Center and Dr. Pete Anderson in Houston, who explained options that didn't include amputation. Ask Richard what he's thankful for and one name comes quickly to his lips. "I'm thankful for Dr. Letson for saving my leg," he says softly. Dr. G. Douglas Letson is the Florida sarcoma specialist who replaced the cancerous 5 inches of Richard's femur with a titanium rod that can be adjusted as he grows. "It was the most painful thing I ever experienced," the boy said of his Oct. 20 operation in St. Petersburg, Fla. "It's still sore." But the experimental procedure was the key to stemming the unchecked cell growth while allowing him to keep the leg. Absent the adjustable titanium rod, children quickly outgrow a standard prosthesis, which is why amputation is the standard option. "We see the light at the end of the tunnel," Rhonda Blau said. "We know where we're at." It would have been a much tougher road without family, friends, co-workers, Little League coaches and classmates of his older sister, Gabrielle, all of whom provided either emotional or financial support or simply gave them the gift of time to cope with the hardship. "We have a lot of people to be thankful for," said Jeff Blau, 49. Richard still has much to endure, including chemotherapy in his immediate future, lots of physical therapy and periodic surgical adjustments to his prosthetic bone as he grows. He's got five years of intensive monitoring until his remission period is over and he can be declared cancer-free. When he's full-grown, a second surgical procedure will replace the adjustable rod with an adult-sized prosthesis. Richard, a Little League all-star, will never realize his dream of playing professional baseball, but thanks to the dedication and love of others, he has his leg and a fighting chance to beat cancer.
Reclaiming his strength and spirit David Frost thought someone had stabbed him. He was at a business convention in New Orleans in June 2002 when a sharp pain exploded in his back, dropping him to his knees. For months he had been experiencing mild discomfort between his shoulder blades, but nothing like this. He managed to get back to his hotel room and caught the first plane home to Charlotte. Doctors performed a series of tests and found a fist-sized tumor in Frost's upper back. It turned out to be granulocytic sarcoma. The disease attacks the bone marrow and increases one's susceptibility to infection and blood clotting. Frost was just 30 years old. He spent the next nine months in the hospital receiving chemotherapy treatments and fighting several different infections. His weight dropped from 175 pounds to 116. In February 2003, Frost was finally released from the hospital. His cancer was in remission, but his muscles had atrophied severely. "I couldn't even get out of bed," Frost said. "When I left the hospital, they took me out in a wheelchair." On December 9th, Frost, now 34, will have run in the Charlotte Thunder Road Marathon. Frost had been training for the New York City Marathon before his cancer was discovered. "I was running up to 20 miles every other day and lifting weights several times a week," Frost said. “I was in the best shape of my life.” But once Frost came home from his stay in the hospital, he was so weak he couldn't even climb stairs. For more than six months he was confined to the bottom floor of his Charlotte townhouse, sleeping on the couch and taking sponge baths in the downstairs half-bath. "I was watching life pass me by," says Frost, who continues to get annual blood tests for cancer. "It was a spirit breaker. I escaped cancer, but it was hard not to feel like I had been cheated." Frost was prescribed a series of pain medications and antidepressants, which made him feel numb and lethargic. Some of his closest relationships suffered because of it. To further complicate matters, Frost developed a spleen infection, which made him even weaker. It wasn't until Frost had his spleen removed in December 2004 that he finally started to regain some of his strength, and returned to work. Frost's recovery was slow and agonizing. At first it took everything he had just to walk around the block. He slowly worked up his stamina, alternating between walking and jogging. Still, he would often come home exhausted and breathing in ragged gulps. Helping spur him on was his wife, Lexi. They had first met at church and had dated briefly. They lost touch for a while, but then reconnected while Frost was recovering and married in 2004. "Dave had to basically learn how to walk again after being in bed for so long," Lexi said. "It's unbelievable to think back to when just walking to the mailbox was a huge challenge for him. Now he's running a marathon. He has amazing fortitude and determination. He's an inspiration to me." As Frost continued to gain strength, the couple ran longer distances together and went on weekend bike rides. Frost joined the YMCA near the couple's house and started swimming. Although still nowhere near the shape he had been in, Frost was making progress. The couple ran a few 5K races, and this past summer they competed in a half-triathlon in Florida. That was a turning point for Frost. "It gave me a sense that I could actually do this," he says. "I really needed that kind of affirmation." Frost decided he was ready to tackle a marathon -- to accomplish something that cancer had robbed him of. He set his sights on the Charlotte Thunder Road Marathon and asked his neighbor, Kevin Krauz, if he would enter the marathon with him. Krauz, a 42-year-old Charlotte police officer, accepted and they started training together in August. “We push each other and keep each other motivated," said Krauz. "Whenever I'm feeling a little puny and don't want to run, I just think of what David went through. I figure if he can do this, then I can do it." While their work schedules prevent them from running together during the week, they adhere to the same training regimen. Since August they've run at least four miles four days a week, and on Tuesdays they run 10 miles. Saturday, their long day, is when they run together, averaging close to 20 miles. They take Fridays and Sundays off. Frost estimates they've run nearly 700 miles since August. "It's like having a second job," Frost said. "Kevin and I keep each other accountable." The marathon will pass right by Frost’s house where friends and family will gather to cheer him on. "This marathon symbolizes my life coming full-circle," says Frost. "I plan on working harder than ever before to be better than what I was."
Jonty's 100 pals are for the high jump! A cancer sufferer from England is hoping to raise £20,000 for charity by signing up 100 people for a parachute jump. Jonty Leathwood, 25 and his wife Kim, 24, have planned the event to raise money for the Royal Marsden hospital in London, which specializes in cancer treatment, after Jonty was diagnosed with synovial sarcoma, a soft tissue cancer in his chest. Mrs. Leathwood said: "Jonty has always wanted to do a parachute jump and wanted to raise money to help others. Cancer puts life into perspective and makes you think more and focus on actually doing what you want to." The couple was shocked to find out that he had cancer in July of this year. At the time they had two young boys and Kim was seven months pregnant. Mr. Leathwood said: "It was the worst news ever. It felt weird and I couldn't believe it. Telling the family was so hard. It is horrible knowing you are hurting people that you love." He has since had intensive chemotherapy sessions to reduce the lump and will be undergoing radiotherapy treatment over Christmas before hopefully having surgery in January. Help from friends and family has been crucial and the same friends and family are taking part in the jump with 45 volunteers currently signed up. The aim is for every person to be able to raise £400 to pay for the jump on April 21, at the Duke of Gloucester barracks in South Cerney, with the remainder - about £225 - going to the charity. A fun day and evenings entertainment is also being held at the Clothiers Arms pub, Bath Road, Stroud on the same day. Anyone who would like to get involved in the parachute jump should contact Kim on 07789 244209 or to donate directly, call the Royal Marsden hospital fundraising line on 020 8770 0279.
Teen battling cancer seeks clothes for his 'angel' -- Mom Shortly after Axel Pérez won the bronze medal at a Central American tae kwon do tournament, doctors in his native Nicaragua told him he would have to lose his arm to save his life. A knot that had grown to the size of a small avocado seed in the crook of his left arm -- and which doctors had dismissed as a sports injury for more than a year -- turned out to be osteosarcoma. They removed the knot, but then told the 16-year-old's family the only solution was an above-the-elbow amputation. His mother, Melania, said she cried first, then mortgaged their home in the rural town of Carrazo to buy two airplane tickets to Miami to get another opinion. Arriving in February with broken English, little money and few contacts, the pair spent three months trying to navigate South Florida's bus and healthcare systems to find Axel affordable treatment. Along the way they were ushered out of TV studios, locked out of hospitals and Melania had a suitcase containing all of her clothes stolen. But their search finally led them to the Children's Cancer Caring Center, an organization that paid for Axel's radiation and the ongoing chemotherapy that will likely save his arm and his life. Now, as the pair are steadying themselves for Christmas away from home, Axel said his biggest wish is for his mother to have some new clothes for the holiday season. And for himself, he would like a video camera to record their ongoing saga. In a perfect world, he said, he would love to go to a Miami Heat game and shake Shaq's hand. ‘‘[My mother] has done so much for me and sacrificed so much for me and hasn't done anything for herself,'' said Axel, whose once-fit body has swollen under chemotherapy. “She has literally been my angel.'' As for the video camera, Axel said he would like to “record all the good times and the sad times we're going through here so we can remember them later -- or just make fun of ourselves.'' Lee Klein is the chairwoman and CEO of the Children's Cancer Caring Center, the organization that nominated Axel for Wishbook and has been paying his medical bills at Baptist Hospital. Axel's initial radiation was so intense that it burned the skin on his arm almost down to the bone. His arm has healed and now he's undergoing harsh weekly chemotherapy. If all goes well, the treatment could end by January. ''He's a sturdy boy and hopefully he will do fine with it,'' Klein said. “It's not the death sentence that it used to be when I started in this 41 years ago.'' But it is still deadly. Sitting in the Miami apartment where he shares a small room with his mother, Axel holds out his arm where a purple scar runs across the site where the tumor used to be. Thanks to a local church, he is a sophomore at Archbishop Curley Notre-Dame High School in Miami. While his English is still halting, Axel can rattle off chemo drugs like a seasoned doctor. Despite the pain, Axel can't help but joke, laugh and talk about the future. He said his dream is be a dentist or a lawyer -- or maybe both. ''I'm a good talker,'' he said, imagining himself as a trial lawyer. “And then if I was a dentist my teeth would always look good while I was talking.''
Jake Maynard, 7, was diagnosed with sarcoma two years ago. He is now free of malignant tumors. Few 7-year-olds have public gatherings named after them. But Jake Maynard of Henrico County, Virginia is special. Two years ago, the second-grader was diagnosed with sarcoma. After eight surgeries and treatment in New York, he is now free of any malignant tumors. Recently, the sandy-haired youngster, wearing a windbreaker, was the star of the second Jake's Reindeer Race for Childhood Cancer. Several hundred children and their families attended the afternoon of entertainment, exercise, music and food held in the picnic area of Innsbrook Corporate Park in Henrico County. Some wore reindeer antlers or Santa helper's hats to match the theme. A costumed red-nosed Rudolph was there. Others had signs declaring their determination to beat cancer, including ones proclaiming: "Fightin' childhood cancer one step at a time." "I look forward to it," beamed Jake, taking time out from enjoying a performance by a juggler-musician. "It's for raising money for cancer research." He likes to plan for the race near the lakeside park. This year, adults paid $20 apiece and kids $10 each to participate in the event. "We get to talk about more ideas for things we do about the race," he said of the planning for the 1K walk or 5K run and walk. Connor Shinn, 7, a Collegiate classmate, explained, "It's important to support Jake and it's important [to raise research funds] for the cancer he had . . . and for people to get medicine for it." He walked along with Jake on the family fun walk. Julia Weinberg, 12, a sixth-grader at Collegiate, also participated. "I know Jake. It's a good cause, and it's a lot of fun." No one seemed to mind the chill or overcast skies. Jake's mother, Cindy Maynard, who also spearheaded the effort two years ago, was pleased and relieved that rain didn't spoil the long-planned fundraiser. She's been working on the benefit since June and hopes it will raise about $50,000. She said about 700 people had signed up in advance to participate in the walk and walk-run. Businesses underwrote the costs of the planning. "A lot of it [publicity and promotion] was word-of-mouth, through schools and a sorority at the University of Richmond. It's really a neighbor, family and friend arrangement," Cindy Maynard said. Why a reindeer run? "The holiday and magic and hope had a lot to do with the name," she said, a headband of white reindeer antlers on her head. She heads Maynard Childhood Cancer Foundation, which raises the cash for treatment and research. This year, the proceeds will go to the Sarcoma Foundation in Damascus, Md., to pay for two research grants. "There's a drastic need for research," she said of the little-understood disease. As for her son, she said: "It's been tough for Jake, but he's been great. You can't do anything to make him better but trust the doctors and hope."
Jim Chastain has a healthy sense of humor. Who would have known — when he’s usually busy skewering the latest film in the local paper. But Chastain’s sense of humor helps when he gets some interesting reactions these days. Like when he gets mistaken for an Iraqi war veteran. “People have said, ‘Oh, I thought you were just back from Iraq.’ And I’d say, ‘No, I’m just back from Houston,’” Chastain says. That’s as in M.D. Anderson, the famous cancer center in Houston. And those sorts of incidents come because there aren’t very many one-armed guys walking around, Chastain will tell you. That’s not to say that cancer is funny. The long-time Norman, Oklahoma resident, film critic and attorney for the Oklahoma Court of Criminal Appeals, lost his arm to malignant fibrous hystiocytoma, a soft tissue sarcoma that attacked the triceps muscle of his right arm. He was 37 years old when he was diagnosed in 2001. Chastain then went looking for books. He found them too - celebrity books mostly written by ghost writers, clinical books written by physicians, and miracle cure books. What he didn’t find was a voice out there in the cancer books that spoke to the common person who lives with cancer, who loves someone with cancer or maybe just knows someone with cancer. So the prolific entertainment writer and poet since the age of 15 wrote one — a slim volume that’s searingly funny, poignant and honest, a memoir that grew out of e-mailed updates to friends and family. “I Survived Cancer, but Never Won the Tour de France,” is Chastain’s first book, published by Hawk Publishing Group. “This is a cancer book, but it’s not a cancer book. It’s a story of a family in crisis. It’s what could happen to anybody in any given situation if things go horribly wrong. And coming to grips that, yes, it all does end,” he says. It’s a page-turning read full of stories and outrageous moments, told in Chastain’s raw and lyrical storytelling style. “Those chapters were written at a time when I was just facing life or death. My whole life was just laying out there,” he says. And there are Chastain’s poems interspersed and providing marvelous segues — some sad, some laugh-out-loud humorous. Like the poem “Lance a Lot,” a satirical ode on one of cancer’s most famous survivors, Lance Armstrong, that starts out, “He smirks from the book jacket having whipped cancer’s sorry butt and those skinny European bikers in the French countryside seven times over.” And Chastain tackles the awkward moments when he runs into friends he hasn’t seen in awhile. “I’ve always been very open to talking about it. There were times when there was only so much you could do. And it never bothered me to talk about it because I think a lot of times it’s the elephant in the room. … I don’t have some sort of bitterness or anything about people’s reactions,” he says. He ping-pongs back and forth with the reader. “What I tried to do is take the outrageous moments and say I’m just going to throw those out there … try to make the thing kind of the highest highs and lowest lows … and getting a little more serious as we go along until you get to the ending — which is really crazy, because as I was writing it, I didn’t know how it was going to end either,” Chastain says. “It was very, very strange, because I thought at the end of this, I might die.” But Chastain didn’t die. And he’s been cancer-free for two years, after a tough three-year battle. “You know, I’ve lost my arm. Am I going to be embarrassed about it? Am I going to stop living? Am I going to stop going places? Am I going to be angry at everybody? You can’t live that way,” he says. “I’m going to do the best I can with what I’ve got and live my life as best as I can.” “I Survived Cancer, But Never Won the Tour de France,” is not what Chastain calls a “weepy Reader’s Digest melodramatic and cliché ridden” cancer survivor book. “I tried to write the book that I would have liked to have read and that’s from someone who’s gone through it and has a sense of humor and who can say it’s crazy and it doesn’t always make sense. It’s not particularly fun. It’s awful at times. But you can fight your way through it,” Chastain says. For more information on Chastain and how to obtain his book, click here.
A Marion County, West Virginia sarcoma survivor has drawn a holiday card for the 15th annual U.S. Cellular Cards of Hope Project. Brogan Raddish, daughter of Marcie and Mark Raddish, has drawn “The Angel.” In 2001, she was diagnosed with Ewing’s sarcoma. “She was in kindergarten, going into first grade when all this happened. She was still a baby,” said Marcie Raddish. Brogan had undergone treatment for a year when, three years ago, more cancer cells were detected. Over the years, she’s gone through chemotherapy, surgery, a stem cell transplant and radiation. She has PET scans every four months. “She’s doing well now,” Marcie said of her 11-year-old daughter. “But in October they saw something on her lung. They wanted us to decide whether to do a biopsy. The oncologist discouraged that, but with Brogan’s history, he went on ahead. “Through the grace of God, everything came back fine. Christmas came early, that’s for sure. “She wore a West Virginia University shirt to the hospital with her little scrub outfit. It was just what we needed to cut the tension.” Doctors removed the top left portion of one of Brogan’s lungs ... “just damage from the radiation,” Marcie said. “She is spunky,” she said of her daughter. “Nobody knows what this child has gone through. But she never questioned it. “As a matter of fact, she helped make the decision to have the biopsy. ‘If there’s something in there, I want to know what it is,’” she said. “‘My mind is made up to do the biopsy.’ “And we all agreed.” The originals of the chosen cards are purchased at the annual Cash Bash. “We have her card professionally framed,” Marcie said. “It’s part of our decor. It’s a reminder of what the card stands for. We do not take it down.” She’s had a “rough time,” her mother said. “She’s had cancer twice and her parents are divorced. But she’s just a joy to be around. I can’t tell you the strength she’s given us. “People prayed for her ... people we don’t even know. She’s affected people’s lives without even knowing it. “She’s been my hero. I’ve said it before. She’s just an inspiration. When I complain, I stop and realize what she’s been through. It’s a reality check.” Brogan is now an active sixth-grader at Dunbar Middle School, where she’s also a cheerleader. Every year, she’s drawn angels for her cards. “I get ideas from other Christmas cards,” she said. “The last one I did, I have a tree topper I used as a model. I think drawing the cards is fun ... and it helps raise money for the hospital.” The Cards of Hope program is a joint project of WVU Children’s Hospital, Mary Babb Randolph Cancer Center and U.S. Cellular, and is the primary fundraiser for the Pediatric Cancer Care and Research Fund at WVU Children’s Hospital. “We’re doing fantastic this year,” said Lora Edgell, director of annual giving at MBRCC. “We’ve sold more than 1,500 packages of cards, and it’s only the beginning of December. “All money earned from the cards goes to support the Pediatric Cancer Care and Research Fund at MBRCC to help kids battling cancer — and those who have battled cancer,” she said. “We have a wonderful committee that plans for this year round. They start planning in January. The card-drawing party is held in June or July, and they start marketing the cards in September. “It’s a huge success,” Edgell said. “I’d like to raise $30,000 free and clear. “U.S. Cellular has been on board for many, many years. They do the billing inserts, sell cards in their stores. They’re a tremendous friend of Cards of Hope. “They have underwritten 100 percent of the costs. All the money goes to children’s cancer care. There are no hidden costs.” Each year, all children who have been patients at WVUH, and their siblings, are invited to a card-drawing party in the summer. This year, about 75 children participated. From this, 10 designs are chosen to be that year’s Christmas cards. “If they’re in the hospital at the time of the party (as Brogan was), we send them a packet in the mail,” Edgell said. “The committee has such a difficult task in choosing the 10 final cards.” The annual summer parties are also a way for the young cancer survivors to stay connected to each other, Edgell said. This is the 15th year for Cards of Hope. This is a unique program, Edgell said. “A lot of other programs call us for information on how we got started. Some even call themselves ‘Cards of Hope’. “I’m hoping to get the name trademarked.” The program couldn’t succeed without the community’s support, she added. “They have embraced it. They’ve made us very, very successful.” A 20-card pack costs $15 of either one design only or a variety pack of 20 (two cards of each design). The back of each card lists information about the patient/artist who created it. Cards will be sold as long as they last, Edgell said. “So it’s never too late to buy one. I’ll ship them priority mail. I’ll even deliver them. I’ll do whatever it takes.”
Live, In Concert - And coming to a living room near you At one time or another we all end up asking ourselves at least one of the following questions: Am I really living? Is this all there is? If I had it all to do over again, what would I do differently? It's only natural. We all question life and its meaning at some point, especially when we lose someone close to us. But what if you found out you only had a couple of years left to live? Would that change your perspective and how you answer those questions? More importantly, would it spur you to action or would you sit back, paralyzed with fear, afraid to get off the couch? For Spencer Green, it's time to get off the couch -- and move to someone else's. You see, Green has been diagnosed with cancer four times since 2002. He's done the "chemotherapy dance" and been through the treatments. In early October, Spencer was informed that his Ewing’s sarcoma was back and presented with limited options. Doctors recommended going through the same type of chemo that was used for his initial diagnosis in hopes that it will still be effective and prolong his life until another treatment is developed. For the time being, Green has opted to wait before beginning treatments and has researched some alternative and holistic medicine approaches. With college on the back burner (for the third time), Spencer has also decided to take life by the reins and pursue his music more fully. Unfortunately, being a professional musician isn't easy and neither is getting a gig in a city that doesn't know you. Nevertheless, inspired to get off the couch and share his songs and story, he has hatched a plan--currently known as "The Living Room Tour 2006". It's both naïve and genius--and promises to connect with audiences of both friends and strangers on a personal level that you don't even get in a small nightclub. So how does it work? Spencer explains it best, so here it is in his words, courtesy of his website: "Say someone owns a living room. The owner of the living room could invite all their friends to come to this hip little underground concert that they were having in their living room. Maybe they could serve coffee, croissants, cookies, carrots, or croutons, or whatever but all the friends of the owner of the living room would come and listen to the music in the living room because there was a guy playing his guitar. Maybe they like the guy playing, or maybe they don't like the guy, but what else were they going to do that night? Exactly. Anyways, maybe the friends of the owner of the living room give a little bit of money in the guy's donation cup for gas and stuff, but even if they don't, they take one of his hip/underground/burned CDs for free. Maybe they like it or maybe they don't, but hopefully they take it and show it to their friends and tell them how awesome the underground/living room/concert thing was and that they should come next time the guy shows up in a living room near you. Then the guy comes back to a living room maybe a couple of months later or so, and they bring even more friends. This way there is free live music in a laid back atmosphere, and hopefully the guy finds more living rooms in different cities." As you might guess, a tour like this starts out with friends and acquaintances, but it has already started to grow. The living rooms have grown to coffee shops, and even a few small venues. Not bad for a young guy who played in the band So Long Goodbyes in college (following his second diagnosis), but never really toured. Spencer Green will be in Tulsa, playing three shows. If you're up for some good acoustic songs and stories about life and living, you'll want to look him up. And yes, Green's tour is a step of faith, but he's not preachy - just down to earth and enjoying life. Click here to find out more and preview Spencer's songs online, then catch him at a living room near you.
Tireless Fifth-Grader, Cancer Patient, An Inspiration At the end of last school year Justin Blackman's biggest worry was how to wheedle a hunting bow out of his father, but in the last several months some things have changed. Justin still loves to hunt and is still an honor student, but now he is also a patient undergoing treatment at the Duke University Cancer Center. Justin has been diagnosed with Ewing's sarcoma. "I ain't worried, 'cause I know my parents are going to take good care of me," Justin said as he added icing to the gingerbread house he was building in class yesterday. Justin's parents, Vernon and Charlene Blackman, have indeed made sacrifices to care for Justin during his illness. Mr. Blackman has spent many nights in Durham keeping Justin company while he received his chemotherapy. Justin's mom, who is also the mother of a newborn baby, will be traveling with Justin to his last chemo treatment this weekend. "The next thing will be a month-long series of five-day-a-week radiation treatments," Mrs. Blackman said. "We may have to stay in a hotel during the week and come home only on weekends." Justin first complained of pain in his left arm at the end of school last year. "Even after several doctors visits and X-rays we still believed it was a muscle pull," Mrs. Blackman said, "but one day Dr. Damien Rodulfo of Healing Hands Chiropractic in Dunn, who was treating Justin, just stopped and said 'something is wrong here,' and insisted we have more tests." Those additional tests identified a mass in Justin's neck, thankfully before it spread to other parts of his body. "We just feel so blessed that we caught it early," Mrs. Blackman said. "There is another little girl at Duke who is in much worse shape than Justin." According to Justin's teacher, Mrs. Padgett, Justin keeps up with his work in spite of his illness. She gestured to a neatly labeled and illustrated book report as an example of Justin's dedication to his school work. "We have book reports that are not due until Friday," Mrs. Padgett said, "but when I got here this morning Justin's report was already on my desk. He always turns everything in early." Mrs. Padgett said she feels privileged to have Justin in her class. "Justin is truly an inspiration to us all," she said. "There have been days when he couldn't lift his head off his desk, but whenever I asked a question that little hand would go up." It was Justin's quiet determination that prompted Jeannine Beasley, whose daughter Sara is in Justin's class, and Mrs. Padgett to establish the Justin Blackman Benefit Fund at New Century Bank. A raffle drawing will also be held, in hopes proceeds will lighten the load for Justin's family. "These are not the kind of people to ask for help, but there is a real need here," said Mrs. Beasley. "The father is self-employed and there are two other children in the home. These are the kind of people you like to help."
Artificial limbs offer optimistic futures At first glance, Sally Barton does not have much to celebrate. As a result of diabetes, her left leg was amputated below the knee in 2003, and her right toes were removed shortly afterward. She spent most of last year in a wheelchair. Since March, she has been in living in a nursing home recuperating from a blood sugar imbalance that landed her in the hospital. Recently, she was diagnosed with Parkinson’s disease. Yet, when Barton, 55, talks about her future, she is optimistic. She credits her newfound faith to a new prosthesis, and the company who gave it to her – Ability Prosthetics and Orthotics Inc. For the first time in more than a year, she was able to walk without a cane. ‘‘I couldn’t have done any of this without this good leg,” Barton said. ‘‘It feels so good and it gives me more confidence,” she said. She pulled up her pants leg to reveal a titanium pole attached to her knee with a socket. For the first time since she lost her lower limb, Barton, a former teacher and supervisor, can walk without pain and the fear of falling. Her first two prostheses were more like torture devices. For a year, she believed that her back pain and the chronic swelling on her knee were due to her condition, not the artificial limb. What she discovered, however, after many sessions with a physical therapist, and more meetings with the prosthetist is that the first prosthesis was an inch short, creating intense back pain. Her second was fitted improperly — the socket for the knee was too large. She said she was told to wear more socks to help the fit. ‘‘I think of all the time I wasted. It was very depressing,” she said. ‘‘I could have been walking, not depending on other people so much, and not just sitting around.” Ability Prosthetics is unique, according to Jeff Quelet, an American Board Certified prosthetist and orthotist, because it uses more than 60 different manufacturers for its clients, rather than creating limbs or braces in-house. Choice and quality are the benefits, he said. ‘‘Everyone [in the field] thinks we’re crazy, but this way we can use companies that specialize in particular devices,” Quelet said. Barton believes Ability’s commitment to client care made a world of difference in her life. Her confidence in the practitioners grew when she discovered that Quelet, himself, has an artificial leg. Quelet, 34, was diagnosed with a type of bone cancer as a child and has lived with an artificial limb since he was 9. His condition was one reason that Rachel and Chris Grove sought him out when their young son Noah needed a prosthesis. Noah was diagnosed with bone cancer when he was 5 and had his left leg amputated through the knee in 2004. The decision to amputate was the hardest thing the young couple had to do, but when faced with losing their son or his leg, they chose the leg. Today, the red-haired, freckle-faced, perpetually smiling Noah is an active and athletic 7-year-old who loves sports, especially football. Because he was so young when he lost his limb, he is able to hop on one leg, leap and jump like a rabbit, his dad, Chris, said. His parents dubbed his prosthesis his ‘‘magic leg.” Quelet, Noah said, has a ‘‘magic leg,” too. ‘‘I could not imagine seeing anyone other than Jeff [Quelet],” Rachel Grove said. ‘‘It was so important because he survived the same disease Noah has, and has a family, children, a great life – all the things we were worried that Noah might not have.” Noah loves to play soccer and swim, and only wishes he could run as fast as the other children. That is the tough part for Quelet, who works with people of all ages, fitting them with prostheses or orthotic devices. ‘‘Kids want to keep up with their friends. They want to wake up and go to the playground,” he said.
The Bracelet Lady Keeps Her Promise Who could handle this? The Bracelet Lady, despite fighting brain cancer herself, is keeping her promise. Lisa Fewox, who lives in Florida, is making free bracelets for anyone fighting any type of cancer. Lisa called Jeannie Blaylock months ago and offered to make free pink bracelets for Jeannie's Buddy Check ladies. Just before that story aired, Lisa's friend called to say there was an emergency. Lisa was having seizures. They thought she might have brain cancer. Turns out Lisa has one of the most vicious types of brain cancers around. But Lisa has tremendous faith. She sailed through chemo without serious nausea and she's waiting for another MRI to see if the chemo helped. Meanwhile, she's answering email requests for her bracelets. She's sent them all over, even to Canada. Lisa has personally been delivering bracelets around Jacksonville, Fl. One lady, Connie, had seen Lisa on TV. Connie fought cancer, too. She had sarcoma, a grapefruit-sized lump on her head. Connie's eyes welled up with tears when Lisa gave her a handmade bracelet with yellow beads. Lisa had researched sarcoma and found its official color is yellow. If you'd like a free bracelet for yourself or someone fighting cancer, just email Lisa. Click here to visit her website. You'll notice on Lisa's website there is a price list. That's for her other customers. If you or someone you know has cancer, please tell Lisa and your "special request" will be absolutely free of charge.
Songs of worship filled Hannah Sobeski's home until her last breath. The South Carolina high school student whose six-month battle with round-cell sarcoma captivated the attention of Spartanburg County residents and people across the world died November 9th at her family's home in Roebuck. Loved ones say the 18-year-old remained courageous and high-spirited until the end, even as her friends and family members gathered around her to say goodbye. "Teenagers started coming in after school, and the yard filled with just tons of teenagers," said Joy McAbee, who was with Hannah's family most of the day. "At one point, it was just family there with Hannah, and then some of her good friends came in. Our youth minister Seth Buckley was there with his guitar, and they were singing praise and worship songs. "The songs probably continued for two hours." McAbee, whose home became a gathering place for friends Thursday night, said Hannah's spirit remained strong, even as her body weakened. She greeted loved ones who came to say goodbye with a smile. Among them was her lifelong friend, Erin McAbee. The girls became best friends in fifth grade. "Ever since then, we've been inseparable," Erin said. Witnessing Hannah's struggle deepened Erin's faith and belief in God. "One of the last things Hannah told us was to keep believing," Erin said. "And that's what I'm going to do -- just keep believing." Erin will remember Hannah as "the best friend (she's) ever had and a hero -- a very godly woman who I will always admire and look up to." Hannah was diagnosed in May. Doctors removed 95 percent of the tumor, but they were unable to remove the remaining 5 percent wrapped around the blood supply to her right leg, according to her aunt, Hope Houchins. Hannah and her parents, Mickey and Debbie, flew to Houston, where the teenager received treatment for 11 weeks at M.D. Anderson Cancer Center. The teenager returned home in early September and continued treatment at Spartanburg Regional Medical Center. On Oct. 13, Hannah was crowned Dorman High's 2006 homecoming queen. The crowning was a dramatic scene; the crowd chanted her name as she walked across the football field, arm-in-arm with her father. The next day, the family learned her tumor had doubled in size. The decision was made to stop treatment and take Hannah home. Hannah's account of her illness on a website touched thousands of people from Spartanburg and around the world. They followed her battle, formed prayer chains for her and even honored her with billboards and restaurant signs. Specialty Gifts Galore, where Hannah worked for more than a year, began making and selling "Hannah's Hope" bracelets. Hannah's friend, Morgan Simmons, flew from Atlanta to be with Hannah during her last hours. Simmons called Hannah en route to Spartanburg. "I told her to hang in there 'cause I was coming," she said. "I told her I loved her and that I was going to try to make it there in time. I told her that she was my hero." Cathy Lanier, who was Hannah's discipleship leader, held the phone to the teenager's ear as they talked. "She said, 'I love you too,' in a very weak voice back to me," Simmons said. It was the last thing Hannah ever told her. "I'll always remember her as a best friend I was honored to have. She is the godliest, most faithful young girl I have ever met," Simmons said. "I thank the Lord for putting her into my life. I know I wouldn't be the person I am today if she wasn't in my life." Hannah taught Jacob Robinson a lot in their year and a half of friendship. "She taught me to fight the good fight until the end," he said. Debbie Sobeski addressed the crowd of teenagers within moments of her daughter's passing. Robinson said the mother urged them to press on and take the torch her daughter had carried and "proclaim the Lord's name through this." In an interview last week, Hannah talked about that journey and where it had led her. "It's been a journey God's brought me through," Hannah told News Channel 7. "I know that God has everything under control and that he has a perfect plan for my life, whatever that may be."
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