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Stories of Courage & Hope Abstracts by Tom Swartz In this issue:
If you build it, they will come. And they did. Hundreds of people from the Whidbey Island, Washington community and beyond attended the unveiling of the newly renovated South Whidbey baseball field and more importantly shared in the magic of Colton Wilson's wish. The 16-year-old cancer survivor was honored with a ceremony at South Whidbey High School on a Friday night in June. Wilson, who was diagnosed with Ewing's sarcoma in July 2006, was granted a wish by the Make-A-Wish Foundation earlier this year. His one wish? To fix up the ball field he and his teammates play on.
Sporting his Falcons letterman's jacket and his No. 51 Falcon's jersey, the teenager who went from not wanting any attention to becoming a "media darling," as Master of Ceremony Jen Mueller of Fox Sports Northwest described him, received a plaque that will remain on the field as a memory of the wish. He also was presented with a watch from Jewelers for Children and a special audio tribute by Wilson's favorite ex-Mariner, Dan Wilson. Not only do Dan Wilson and Colton Wilson share the same last name, they also share the love for the same position - catcher.
So how did Colton respond to all the gifts and festivities? By saying, in typical teenager fashion, "That's cool." He finally opened up a bit telling the audience, most sitting on brand new, shiny bleachers that came courtesy of his wish, "Thanks everyone. This field is pretty amazing and I'm looking forward to playing on it." And more and more it’s beginning to look like that will be a reality come next spring.
Wilson has two more doctor appointments and if things look as good as they have, he could have his Hickman line removed in less than a month. The Hickman line is an intravenous catheter that is in Wilson's chest and is used to administer chemotherapy treatment. "Then I'll be free," Wilson said.
Wilson was able to get back onto the field Friday throwing out the ceremonial first pitch and playing in a two-inning game that pitted the Falcon's players against the South Whidbey staff. "It felt good," Wilson said. Wilson batted third and played third base, a position he is likely to play in the future as crouching down behind the plate could give his leg too much stress. He singled in his only at-bat.
"I can't wait to have my leg healed up," Wilson said as he signed autographed baseball cards that were made by the Make-A-Wish Foundation and had his photo with story on the back. For those in attendance, the night was not just about baseball. South Whidbey head coach Dave Guetlin said it best in his speech: "It isn't about baseball. He's given us all a way that we should live our lives ... He's given us all a chance to make memories and have dreams." For the teenager that started out wanting to help a school and instead did all of that and more, his wish came true and his fields of dreams became a reality.
Having a disfigurement is a constant battle, but Susan Campbell Duncan still lives life to the full. The brave Scottish woman was diagnosed with sarcoma in her left cheek at just four months old, and wasn’t expected to survive having it removed. Forty three years later the one-time miracle baby has had more than 60 reconstructive operations, endless skin grafts and a rib put into her jaw. Despite the resulting disfigurement she’s facing life’s challenges head-on – and even enjoys being one of the UK’s unlikeliest pin-ups.
Susan says: “I was only a baby when doctors discovered I had a sarcoma, which is a very deep cancer, on my face. They didn’t want to operate straight away because there was so much tissue that needed to be removed and my parents were warned I probably wouldn't survive. I got radiotherapy between the age of four and six months, and by the time I was two I was strong enough to go through surgery. I lost a lot of bone and tissue. There was nothing left between my eye and my jaw bone. I must have been a little fighter because the operation to take the cancer away was very invasive, but I pulled through.”
A photo of Susan at her third birthday party shows a bandage over the scar on her face as she prepares to blow out the yellow candles. It’s hardly surprising that one year later Susan’s parents dropped their little daughter off at school expecting her to be mercilessly bullied. But thankfully the other kids saw through Susan’s disfigurement to the fun-loving girl inside. Susan recalls: “I just expected to get on with everyone else and for the most part I did. There might have been a few names now and then but I ignored them. I was always good at my studies and went on to get seven O-Grades and three Highers, which are Scottish A-Levels, in English, French and Art. At 17 I attended college in Greenock and did an HNC in secretarial studies. Eventually I got a job at the IBM manufacturing plant in the town. By then I’d realized I’d never look perfect, but I was confident in myself and got on with it. Although I looked different my colleagues got to know me as a person, and not for my face.”
Since the sarcoma was removed Susan has required constant reconstructive operations. Throughout the eighties and nineties she had more than 60 procedures in the plastic surgery unit of Glasgow Royal Infirmary – each episode leaving its mark. Susan chuckles: “When I reach up and touch my face I’m actually touching another part of my body. Skin from my shoulder was used to build up my cheek. This transfer of tissue is known as a free flap. One of my ribs was inserted to extend my bottom jaw. These procedures are extremely risky and don’t always have good results. I know first hand what it’s like if things go wrong. Sometimes your body rejects the flap and the tissue starts to disintegrate. It’s not pleasant, especially when the skin is on your face, and the treatment can be long and painful.”
Thankfully Susan hasn’t required surgery since 2002, leaving her free to indulge her favorite hobby – travel. From India to Egypt and Canada to Singapore the go-getting civil servant who now works in Edinburgh has visited more countries than most of her colleagues. Susan says: “I’ve got so many special memories. In Egypt I took a hot air balloon over the Valley of the Kings. At Niagara I flew across the falls in a helicopter and I loved the beauty of the Taj Mahal in India. I always push my boundaries and try out different things."
This year Changing Faces - the UK charity for people living with disfigurement – celebrates its 15th anniversary. Susan was over the moon when she got an offer to star in the organization’s ground-breaking poster campaign in 2003. She even enjoyed a brief taste of stardom promoting the charity which has been her lifeline over the years. She says: “I never dreamt I’d be a pin-up one day. People walked up to me in the street and introduced themselves because they saw me at the bus stop. The poster campaign was really important because there is a lot of ignorance towards disfigurement and it showed there's actually a person behind the face. I understand it’s difficult because people see someone who looks extremely different and don’t know how to react. But I’ve heard sniggers and comments, mostly from teenage girls, and it hurts. A big part of the problem is that you feel isolated and alone. I hope I helped break down barriers and opened minds towards those with visible difference. Changing Faces has helped so much by putting me in touch with others who are going through exactly the same thing.”
Susan’s been in a relationship for five years now, and enjoys the company of someone who loves her for who she is. But as unnecessary plastic surgery continues to grow in popularity she wishes less importance was placed on outward appearance, and supports Changing Faces' efforts to this end. Susan says: “For people like me plastic surgery isn’t about botox and nip and tucks. “It’s about quality of life. There's much more to me than meets the eye."
Tye Lund’s world was taken right from underneath him when he was diagnosed with cancer in July of 2006. But not even a year after being diagnosed, the 9-year-old has conquered the illness and is back doing what he loves the most – racing his yellow Honda ATV. His uphill 11-month battle reached a climax on a Chamber of Commerce day at the Kodiak Island Raceway when he raced to victory in all three junior ATV last August. He not only won, but also was able to put a year of struggles behind him with three hours of racing. By looking at the smile on his face and the fun he was having with his friends, it wasn’t apparent that this youngster was fighting for his life not too long ago. He was just happy to be back racing. “Racing is his passion,” said his mother Kim Tulipani “After he woke up from surgery and left ICU he said he wanted to walk. He wanted to ride again.” This was only the second time he has been on an ATV since being diagnosed with cancer in his jawbone. His first ride came a day earlier and it looked like the 2005 junior ATV track champion never lost a beat. “It’s good to be back,” a very quiet Lund said, sitting on the back of a trailer.
His fellow racers are really glad he is back. “We should make a fan club for Tye up on the tires,” Kavik Eads said. “It’s good that he is back,” said Levi Bunting, standing next to Lund’s ATV. It was Bunting, who dedicated one of his races to Lund last year. And after winning a first-place trophy, Bunting sent it to Lund in Boston. To Lund, the past year is just a blur that started in Boston over a year ago.
“We were in Boston visiting my parents and he had this bump growing in the back of his mouth and I was like, ‘wow, this is odd.’” Tulipani said. “I came back to Kodiak and took him to the dentist and they said it didn’t look good.” Tulipani quickly scheduled a trip to Anchorage, where doctors would remove a golf ball-size lump in the back of Lund’s mouth. It didn’t take the doctors long to diagnose Lund with leiomyosarcoma of the mandible. Lund had to fly back to Boston in July to be treated.
“He didn’t know what exactly was wrong with him until we got to Boston and went to meet with the doctors,” Tulipani said. “They told him that this is what’s wrong with you and this is what’s going to happen. Like any other kid he was scared.” Tulipani was told that this was only the third case of this type of cancer in the world. Even more odd this cancer is usually only seen with people over the age of 45 who smoke or chew tobacco. “It was one of those freak things that never happens,” Tulipani said.
On Aug. 4, Lund underwent 16 hours of surgery, in which doctors removed 60 percent of his jawbone and replaced it with his fibula. The doctors then wrapped the left side of his jaw with a titanium plate. Lund spent the next four days in ICU and three days in a regular room, before being discharged a week ahead of schedule. He returned to Kodiak in September and has to go to Anchorage every six months for check-ups. “You can’t even tell this kid was beat up or anything,” Tulipani said. Two months after coming home, life sent him another obstacle to overcome when his dad passed away in November. “That was even tougher for him,” Tulipani said. “They did everything together. They were father and son best friends.” Lund got into racing because that’s what his father did and he will continue to race no matter what is thrown his way. “He goes out racing because he has a passion that will never die in his eyes,” Tulipani said.
Family, Friends Help Keep Recovery On Track With five rounds of chemotherapy down and 11 more to go, James McCollum says he is ready for anything. The Poolesville, Maryland resident was diagnosed with osteosarcoma on February 21st, just days before his 18th birthday. ‘‘He’s one in 1.5 million, according to the surgeon,” his mother, Robin McCollum, said last week. ‘‘A lightning strike is probably more likely than this kind of cancer.”
James McCollum is the honorary chairman at the American Cancer Society Relay for Life of Poolesville, where sponsored teams will spend a weekend circling the track at Poolesville High School to raise money for cancer research. Last year’s inaugural event raised about $165,000, and organizers hope to reach $125,000 this year, the event’s co-chairwoman Chontelle Hockenbery said last week. Event organizers knew McCollum through his mother, an active volunteer in the community, Hockenbery said.
Even though McCollum underwent 6-and-a-half hours of surgery to remove the tumor in his right arm on May 23, he said nothing would keep him from the Poolesville event. ‘‘Even if I’m still in a sling, I still want to walk around that track,” said McCollum, who plans to attend the Relay with his mother, his fiancée Monica Ziafat, 20, of Potomac and his grandmother, a melanoma survivor. If history is any indication, he will keep that promise. He was awake and talking 15 minutes after the surgery, in which doctors replaced the rotator cuff and bone in his upper arm with titanium rods and a cage to house the shoulder joint. McCollum’s doctors expected him to spend six days recuperating at Georgetown University Hospital in Washington, D.C., but despite some lingering pain and numbness in his arm, he was released after three days, his mother said. ‘‘He just doesn’t want to sit down. When he’s not in the hospital, he’s always moving,” she said. ‘‘...He’s a six million dollar man now — he’s got a bionic arm.”
He credits his recovery to the support he’s received from his family and friends, especially his mother and Ziafat. ‘‘Without them I would be completely clueless,” McCollum said. ‘‘I don’t know if I would’ve made it this far.” Although the couple has been dating for more than a year, his struggle with cancer has only strengthened their bond. Ziafat quit her full-time job to help care for him, and the two were baptized by Ziafat’s mother, a nondenominational minister, shortly after the diagnosis.
In March, Ziafat’s mother performed a union ceremony for Monica Ziafat and McCollum where they exchanged rings and vows, he said. ‘‘He’s been so courageous,” Monica Ziafat said last week. Although they’re not legally married, they plan to make it official once McCollum completes his chemotherapy in the fall. In the meantime, they have been going out with friends, playing pool and bowling. They attended the Poolesville High School prom last month. ‘‘Most young ladies would run, but she’s been absolutely fabulous,” Robin McCollum said. ‘‘She’s the love of his life — I can’t say enough good things about her.”
James McCollum, who was a starter for Poolesville High’s football and basketball teams during his freshman and sophomore years, first knew something was wrong in late December when he began experiencing pain and swelling in his right shoulder. ‘‘When I get a little bump or bruise I just suck it up, but a month later it was still there,” he said. He originally thought a torn rotator cuff was to blame. After six weeks of trying to figure out the problem with an orthopedist, an X-ray revealed a tumor his mother described as the size of a grapefruit. McCollum was referred to an oncologist, who confirmed the family’s worst fears — he had osteosarcoma. ‘‘I only started crying because my mom was crying. It was still a pretty big shock,” he said. ‘‘I wasn’t expecting that. I just sat and was really quiet.”
Two weeks later, McCollum began chemotherapy. ‘‘Everything came to a halt, including work and school. I didn’t have the energy,” said McCollum. There have been some speed bumps in the road to recovery. He had an adverse reaction to one of the chemicals used in chemotherapy that caused his tongue to swell up, and a blood clot was later discovered in one of his lungs. ‘‘It’s an emotional roller coaster,” Ziafat said. ‘‘At one point, I really thought I was going to lose him.” When McCollum finishes recovering from the surgery, he will begin physical therapy and resume chemotherapy to eliminate traces of cancer. At issue are four lesions that doctors discovered in his lungs, which may or may not be cancerous. ‘‘It’s going to be what it has to be,” Robin McCollum said, adding that she’s still somewhat in denial about the situation. ‘‘There’s not a lot to do.”
The family, which has a history of cancer, has been using humor to help get through the especially rough spots. Ziafat bought McCollum a ‘‘Cancer Sucks” sweatshirt on a trip to Ocean City after their union ceremony. She calls him ‘‘the sexiest bald man I’ve seen in my entire life,” while Robin McCollum affectionately described her son as ‘‘a skinny Uncle Fester.” ‘‘All he’s been doing is laughing because that’s all you can do,” said Ziafat. The couple has stayed busy creating T-shirts and bracelets to sell for the James McCollum Fund. They raised about $1,000, which will go towards medical bills and paying back their families, who have been financially supporting them ever since James McCollum became ill. The family also hopes to become more involved in the Relay next year when James McCollum is back to feeling more like his old self, Robin McCollum said. ‘‘Ever since this happened, I’ve wanted to give back,” James McCollum said.
He has brought that same dedication to his recovery, and those who know him have faith that his attitude will help him ride out the storm. He said, ‘‘The doctors told me I wouldn’t be able to play football or basketball again, and I said, ‘Watch me.’”
Michigan Grad Remains Optimistic As He Fights Cancer For 18-year-old Miles Levin and his Bloomfield Hills, Michigan family, there are no easy answers. That's because Levin may face the end of his days soon. This at a time when the young man should be enjoying his rite of passage into adult life, after graduating from high school in June and being given the honor of speaking at its commencement ceremony. Levin suffers from rhabdomyosarcoma. Nearly two years after his initial diagnosis with the illness in 2005, his cancer came out of remission in the spring, dimming his prospects of survival but not his boundless optimism. "I look around me at the community that's surrounded me, and I think people have learned so much from my experience and become better people, like me, in terms of knowing the greater good," said Levin. When he's not traveling to Beaumont's Royal Oak hospital or to New York City to see a renowned sarcoma specialist, he is often bedridden these days in his parents' home. Earlier this summer, he underwent chemotherapy.
Levin's undeniable courage has garnered him recognition, too. He was awarded the 2008 Leadership in Courage Award at the beginning of July by the Sarcoma Foundation of America, a nationally renowned nonprofit aiming to find better treatments for soft-tissue cancers like the one ravaging Levin's body. As the foundation had already named a 2007 recipient, his family and doctors asked that he be given the award a year early, in the unfortunately likely case he isn't around next year to accept it. He was also featured on CNN by anchor Anderson Cooper twice in June. This sent the hits on his already beloved blog at carepages.com through the roof, from about 1,000 a month to more than 15,000. Levin's dad helped set up the blog, but his parents say he's made it all his own, chronicling the trials and tribulations of his debilitating condition, wading through the unknowable and finding meaning in his existence. Still, when he feels too weak these days to make one of his regular posts, his mom puts something online with his help. "He's endeared himself to so many people" by doing that blog, said his mom, Nancy Levin, 56, who quit her practice as a psychologist in March to tend to her son full-time.
There aren't too many questions worth asking, like why, or how this did happen to me, says Miles Levin. There's no rhyme or reason to it; doctors don't know what causes rhabdomyosarcoma, why it's more prevalent in children and teens, or, as with other cancers, how to cure it permanently. But he takes solace in knowing the effect he's had on other people's lives. "I can't tell you how many times I've heard kids say Miles' message gave them a sense of purpose and hope," said Charlie Shaw, head of Cranbrook's Upper School. "He changed the course of the academic year and put an unmistakable sense of purpose into even the most distracted seniors." Inspired by Levin to do so, students at Cranbrook, as well as friends and neighbors of the family, have raised thousands of dollars for cancer research, say Shaw and Miles' parents.
Still, Miles' illness has taken an immeasurable toll on his family, which includes his father, Jon Levin, 56, and his sister, Nina Levin, 16. They appear noticeably frazzled when you visit their home: a consequence of lots of sleep lost and endless hours worrying, they say. His sister just came back from a study trip to France; she says the temporary escape provided some relief.
Miles paired with acclaimed journalist Bob Woodruff, a fellow Cranbrook grad, to give the commencement address at his graduation. Woodruff has also become a close family friend, Miles says. As with his blog, those relationships he's built as he's gained added media exposure have kept him upbeat and given him an added purpose. "It's really been a great community and support network that's built around me," he says. His Beaumont doctor, Charles Main, chief of pediatric oncology for the hospital system, says the blog has proved an inspiration to countless young people. "Miles is exceptional," Main said. "If you had a scale on which you measured people on and how they tolerated and lived with what they've gone through, he'd be truly remarkable."
Indie Musician's Fight Ewing's Sarcoma Indie Musicians will officially be able to use their music to heal, and send a strong message of hope for patients fighting Ewing's Sarcoma. Artists can submit their music for this project at the official website for the project, "Stomp Out Cancer". Thanks to the Indie Music Resource Group, a collection of talented individuals who have their finger on the pulse of the Independent Music Industry, a compilation CD titled, “Stomp Out Cancer: Indie Musicians Fight Ewing’s Sarcoma,” will work to bring support to researchers and Doctors with 100% of the CD’s earnings going towards finding a Ewing’s Sarcoma vaccine, and early detection testing methods.
Jake Wheat, Station Manager for StreetBlast.com lost a dear friend, Steven Michael Mackin to the disease on October 28, 2006, and after learning of his passing, Wheat decided to attack his grief and guilt by raising money to help fund research into finding a vaccine and to help support services for people suffering from Ewing's Sarcoma. "Stomp Out Cancer: Indie Musicians Fight Ewing's Sarcoma," is now moving forward to create a buzz and to raise awareness and funds for Ewing's Sarcoma research, even incorporating innovative Bandlink™ technology that will allow the listener to insert their CD into their computer and learn more about Ewing’s Sarcoma, get updates on how much money has been raised so far by the CD project, and interact with other people involved or suffering from Ewing’s Sarcoma. This is an inspiring project, one that will interconnect art with medical funding, and truly allow music to heal.
Wheat wants people to know that Steven Mackin was a bright spot in the lives of hundreds of people. His death touched the lives of people all across the World, with his constant communications with friends both online, and offline through his constant communications through chat software, community based websites, and his LiveJournal account. Steven’s first battle with Ewing’s Sarcoma caused him to lose the ability to use his legs, and required crutches. Regardless of his disability after his remission, he traveled and explored life, and was able to continue and keep with his active lifestyle, not allowing his past to stand in his way. He spread beauty and laughter wherever he was, and loved people.
Wheat’s memories of him were very special, and the last conversation Wheat had with him was by phone on June 29th, 2006 at 10:49 am. Steven spoke of some recurring pain in his lower back, which prompted him to go back to the Emergency Room, due to the pain being similar to his first round with Ewing’s Sarcoma. He was worried, scared, and because Wheat is an EMT was trying to find some comfort in the conversation. This would be the last conversation that Steven and Jake would share. Wheat then lost contact with Steven and ultimately did not hear the news of his recurring cancer, and the sad news of his passing until almost six months later. The mourning of Steven’s loss has been tremendous for Wheat, because he was not able to say goodbye. An early morning visit to Steven’s gravesite allowed Wheat to pay respects, but it was not until he drove back from Bardstown to Louisville that he decided to raise money to fight Ewing’s Sarcoma.
"Stomp Out Cancer: Indie Musicians Fight Ewing's Sarcoma" brings to the table several talented individuals who have joined forces as the Indie Music Resource Group (IMRG) and are donating their talents to make this project a success. IMRG includes Phil Peretz (CDDVDNow.com / Indie Artists Alliance.com), Troy Edlin (TroyEdlin.com), Phil Peretz & Scott Lonis (iMuzic.com), and Jake A. Wheat (StreetBlast.com). These individuals are working to bring this project to life with new CD technology, promotion, and artist incentives - along with keeping the project goal in mind, which is to raise as much money to fight Ewing's Sarcoma as possible. Jake Wheat explained, "Steven’s loss has saddened and angered me more than I can explain. However, I will not let his passing go without memorial, and Steven is owed a distinctive honor. Some good has to come from this sadness. The mixed genre CD is slated to be released on October 28th, 2007 in loving memory of Steven Michael Mackin.
Fall Fashion Show Makes Fighting Cancer Chic Seattle area boutiques are teaming up for an evening of fashion to raise money for the Northwest Sarcoma Foundation. Fashion First aims to celebrate fashion, showcase great collections and most importantly unite the fashion community in Seattle while raising support for charitable causes. This year, Fashion First is partnering with the NW Sarcoma Foundation, an organization dedicated to providing education and support to patients and families of those suffering from this rare and challenging form of cancer. Over $37,000 has been raised in memory of Jared Seegmiller, a founder of Fashion First who sadly lost his battle with sarcoma in 2005. The show was held Aug. 2 at Jonas Jenson Fremont Studios.
V4N4 ESUN Copyright © 2007 Liddy Shriver Sarcoma Initiative.
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