Read inspiring sarcoma April 2007
Stories of Courage and Hope
An ESUN Resource
Surviving the odds one day at a time
Mary Ann Filipowicz had dreams when she married her husband Janek in 1997. She dreamed of their life together, making memories as a couple, building a home and starting a family. Those dreams were almost shattered when Janek was diagnosed with epitheliod sclerosis fibrosarcoma. But, 10 years later, Mary Ann and Janek are living the American dream - owning a home, raising one child with another on the way, and living life ... all while grappling with Janek’s ongoing battle with cancer. The story begins 10 years ago, Mary Ann said, when her husband discovered a large lump near his stomach while showering. The couple didn’t even have a primary care physician at the time. “We were young newlyweds and never thought about going to the doctor on a regular basis,” Mary Ann said. Janek was referred to a surgeon, who removed a 9-by-9-centimeter mass. The surgery left a gaping hole in Janek’s abdominal area, which had to be repaired by a plastic surgeon. The couple felt immense relief when the first test came back and diagnosed Janek with fibromatosis, a benign fatty mass of tissue. However, days later, the joy turned to disbelief when it was revealed that after further tests, Janek had cancer. One year after the surgery, during a routine CAT scan, Mary Ann said they received the upsetting news that the cancer had metastasized to Janek’s lungs. “We were really scared at this point because we thought that if it could spread to the lungs, where else could it spread,” Mary Ann said. After having surgery to remove the nodules from his lungs, Mary Ann said they sought out second and third opinions from the University of Michigan and Sloan Kettering. All the hospitals agreed: Janek had epitheliod sclerosis fibrosarcoma. Doctors only gave Janek about 14 months to live. “We were healthy young people, living life and having fun,” Mary Ann said. “I was devastated and really struggled with the news, because I lost my mom to cancer when I was 15 and automatically assumed the same would happen to my husband. Janek was so strong, though. I never saw him get down.”
Janek began chemotherapy, but stopped after two rounds when the tumors were continuing to grow. “We began searching for an option - absolutely any option - to get treatment for Janek,” Mary Ann said. “After much searching, because there are not many trials for sarcoma, we were lucky enough to find a clinical trial he could be a part of.”
The Filipowiczes made the decision to be involved in a clinical trial for sarcoma patients at the University of Michigan Health System, under the direction of Dr. Laurence Baker, a fibrosarcoma expert. He, along with 50 other patients, began taking RFS 2000, as part of a 3-year clinical trial. “My husband was one of the success stories, because over the course of the trial, his tumors remained stable and didn’t grow,” Mary Ann said. “We felt blessed to have found something that worked.” When the clinical trial ended in 2002, Janek made the decision to forgo any treatment to try and live a normal life - working, socializing, traveling and possibly trying to start a family. “I completely and totally disagreed with his decision to stop taking medicine,” Mary Ann said. “I begged him to at least get a script for RFS 2000, but ultimately, we decided to see what went on with the cancer, without the poisons of chemotherapy running through his body.” With no chemotherapy, Janek continued with his regular CAT scans for three years and had no significant changes. During this time, Mary Ann said, they began discussing the possibility of starting a family. “This is something we wanted since the beginning of our marriage, but we knew that conceiving a child when Janek was sick would not have been responsible,” Mary Ann said. “We thought that since there had been no changes, we could start the family. We knew that there was no such thing as the tumors disappearing, because there is no cure, but we always pray for one.”
The couple faced another agonizing decision on whether to conceive the child naturally. “One doctor told that that because of the amount of chemotherapy Janek had undergone, there was a chance something could have been wrong with the baby,” Mary Ann said. “After discussion with other doctors, we found out the risk was not as high as we previously thought. We had been wanted this for so long, so we decided to try naturally to have baby.” Wincenty was born in June 2005 and Mary Ann said that it has changed their lives forever. “You don’t realize what a blessing a child can be until it actually happens to you,” Mary Ann said. “When you are dealing with a disease as awful as cancer, you can forget that there are blessing out there. Then I look at our son and realize just how lucky we are.”
Overjoyed at the birth of their child, but still worried about his cancer, Mary Ann said that Janek’s doctors were growing impatient that he was receiving no treatment for a disease that had already spread. “Janek did not want the poisons in his body and wanted to continue researching other options,” Mary Ann said. “We discussed our options and decided to pursue another form of chemotherapy called Gleevec.” Before Janek started receiving the chemotherapy, they had a very welcome and pleasant surprise; Mary Ann was expecting another child, due this August. Janek began the therapy in last November, one month after finding out about the new baby. “We have discussed what would happen if something should happen to Janek, because he is the sole provider for the family,” Mary Ann said. “I am realistic in the knowledge that I would have to go back to work, raise children and honor my husband’s memory should something ever happen.”
In addition to planning for the new baby, Janek and Mary Ann are also researching other treatment options at Karmanos Cancer Center in Detroit, which has a sarcoma specialist center. “We know he has this time bomb inside of him that could go off at any time and we just want to try every option available to us,” Mary Ann said. “I want my husband to be around for a long time.” Mary Ann admitted that it is her husband’s strength that gets her through her darkest days; days when she feels like she can’t see a light at the end of the tunnel. “My husband brings us all hope, with his positive attitude and strength,” Mary Ann said. “He always said that he doesn’t feel like there is anything wrong and although some people may say that seems like denial, sometimes that is the best way to deal. You have to hope for the best but expect for the worst in dealing with a disease like cancer. It is like my husband is fighting a war, except the war is taking place in his body.”
She also said that her very firm belief in the institution of marriage, spending your life with one person and being fully committed to that person has helped her overcome some of her darkest days. “It has been like a roller coaster ride since we said I do,’” Mary Ann said. “I am fully committed to my husband and I took my vows very, very seriously. When I said in sickness and in health,’ I meant it. I love him too much, and I could never and would never leave him.” Mary Ann said that if there can be a positive that comes from her husband’s battle with cancer: how it has changed both of their outlooks on life. “We are able to keep our life simple and not complicate it with things that aren’t important,” Mary Ann said. “We learned to live for right now and I would offer that advice to anyone. You never know what is going to happen tomorrow, so focus on making every day special.”
Survivor's Battle With Cancer Is Over, but She Continues the Fight
At age 21, Sarah Gordon never thought she would hear the words "You have cancer," much less "You may need a cane, and you'll probably never be able to run or bike again." The news from Gordon's doctor seemed to come out of nowhere. She had just finished a 500-mile bike race from Minneapolis to Chicago, her hometown. She worked out regularly to keep fit. Running and biking were part of her routine, and she also walked to class every day like many other students living on campus at Miami University of Ohio. Presumably the picture of health, her first thought after hearing her diagnosis was "How is this happening to me?" In her senior year of college when she was diagnosed with soft tissue sarcoma, Gordon first went to the doctor after feeling pain in her posterior while sitting. Initially, doctors thought it may have been a calcium deposit, but after further tests, she learned the softball-size lump in her right buttock was malignant. Of the 1.4 million Americans diagnosed with cancer each year, only an estimated 70,000 will be between 18 and 40 years old. "These 70,000 voices are the smallest and hardest to hear sometimes," Gordon said.
The news devastated Gordon. She lashed out, emotionally broke down, and even physically broke down — smashing a window out of anger. But days later her mood quickly changed to optimism. "I will beat this," she told a group of friends in her college apartment. She had to leave her college in Ohio to return home to Chicago. Gordon endured six weeks of radiation, two surgeries and five months of chemotherapy, in addition to many more injections and countless cold sweats of fear. She lost her hair, she lost muscle, and she was starting to lose faith. "Death was a daily thought for me. I thought the treatment was going to kill me more than the cancer would," she recalled. And then she made a frightening decision — to stop all chemotherapy treatments. As a last resort, with the help of a family friend, she traveled to Lourdes, France, to visit the Roman Catholic healing shrine. For more than 150 years, the Lourdes shrine has been the site of many reported miracles, and an estimated 6 million pilgrims visit the healing waters each year. When she arrived, Gordon was so weak she had to be carried out to the stone-walled bath filled with holy water on a stretcher. But weeks later, she was back on her feet and feeling better than she had in five months. Whether it was the medicine, faith or both, she gradually started to look and act more like the same girl she was a year before. Her cancer is now in remission. "I think it was a combination of the surgeries, baths and most of all the mental battle of believing," she said. Throughout the treatment, Gordon had friends and family by her side. She had a support group of cancer patients to talk to, but many were older, and she found their stories at age 40-plus different from hers. She decided to keep fighting for cancer patients her age, even though her personal battle seemed to be over.
The same late night in February 2003 when Sarah was sweating with fear, she wrote a promise to the cancer community: "I promise you one thing, wherever you take this, if you let me move on — cancer free or not — I can assure you of something: I will do wonders with this priceless education you have so generously given me. Whatever decision you make, I will dive into this, I will start foundations, I will plan charitable events: runs, dinners, benefits. I will be an active member of the cancer community in every way I know how." She has kept her promise for more than four years. She currently works full-time for the Ulman Cancer Fund in Columbia, Md., where she founded and organized a program called Run-Tri Together that encourages young people to raise money by competing in half marathons, full marathons or triathlons. All funds from the program go to cancer support and outreach programs. Gordon also offers support to another sarcoma patient through a group called the Imerman Angels. She talks regularly to a 28-year-old cancer patient in Chicago and reminds him how important it is to keep fighting. Immediately after graduating from college in 2003, Gordon organized and ran in a 5K race in Chicago to raise money for the Ulman Cancer Fund for Young Adults. Since her first 5K, she has run three half marathons, two triathlons and will complete her first full marathon, the Paris marathon, April 15.
Fundraising for cancer is both her full-time job and her most time-consuming hobby. Sarah will be running in the Paris marathon and trying to raise $70,000 for each of the 70,000 voices in the 18 to 40 age range who will be diagnosed with cancer this year. Her $70, 000 fundraising mission will continue until the end of 2007. "I want to raise $70,000 this year to educate the young and let them know they're not invincible while also challenging the 70,000 young people being diagnosed with cancer to embrace the challenge."
Party and Celebrate Life
Jesse Laura, stricken by Ewing’s sarcoma, had a simple last wish: to party and celebrate life. So the 21-year-old Dallas man wanted his friends and family to gather March 31st at his favorite restaurant for a crawfish and shrimp boil. But in a turn of events that illustrates life's fragility and unpredictability, the party to celebrate life suddenly took on a poignant new meaning. Three years ago, Jesse met Mimi Nichols. They fell in love and dated for more than a year. Then in January 2006, Jesse was diagnosed. But it strengthened the relationship between Jesse and Mimi. Last summer, he took her to California to celebrate her 21st birthday. He asked her to marry him, and they agreed to delay the engagement until he conquered his cancer. Jesse moved back into his parents' North Dallas home while he underwent treatments. He and Mimi enjoyed going out to their favorite restaurant, Half Shell's Oyster Bar and Grill. But instead of getting better, Jesse got worse. Then, it became clear his disease was incurable. On Ash Wednesday in February, Jesse came home from the hospital to be under hospice care. Someone was always by his side, whether it was Mimi, his parents, Felix and Nita Laura, or one of his sisters, Rita, 24, Kendall, 18, or Kaitlyn, 12.
A few weeks ago, he told his parents he wanted to have a party to celebrate life. He envisioned a crawfish and shrimp boil at Half Shell's for a few dozen friends and family members. And he told his parents that his last wish was to pay for his sisters' college educations. He asked that contributions in his memory go to a fund set up to do just that. As Jesse grew weaker, his celebration became more important to him. He was in and out of the hospital but still wanted to party with friends and family. That's when the Clayton Dabney Foundation for Kids with Cancer got involved. The foundation's mission is to help families with children in the last stages of terminal cancer create everlasting memories. The help is arranged through the parents and is anonymous to the child. Because Jesse had a childhood cancer and was treated at Children's Medical Center Dallas, he and his family were eligible for foundation assistance. Half Shell's owners, Bill and Lovett Bayne, agreed to host the crawfish and shrimp boil at no charge. Their fish supplier, Fruge Seafood, donated the crawfish and shrimp. Jesse was elated.
As the Saturday party date drew closer, Jesse became more excited about the party. At the same time, he took a turn for the worse. As the party invitations went out, it was agreed to move the celebration to Jesse's parents' home. On Thursday, Jesse came home from the hospital and was ready to party. But by the time Saturday rolled around, he had taken another bad turn. At 3 p.m. Saturday, the guests started arriving, only to be told that Jesse would miss the party because he was bed-ridden and not totally coherent. Knowing it was Jesse's wish to have a good time, the 60 friends and family proceeded to do so. His mother was thankful for the turnout. "We knew they were there for Jesse and us," she said. "Jesse touched a lot of lives, and it was humbling to see that on Saturday." Some folks went in to see Jesse, who was having difficulty breathing. At 6 p.m., his crawfish and shrimp boil, his celebration of life, ended, and everyone went home. Less than two hours later, at 7:51 p.m., Jesse took his last breath.
"He was a fighter," Nita said. "He never whined. Whatever it took, he would do. He was very inspirational to a lot of people." Maggie Graham, a Clayton Dabney Foundation board member, said the group's work is always done anonymously, but this was the first time a beneficiary had invited the group to attend a gathering. "This is the first time any of us have seen anything like this in person," Ms. Graham said. "It says a lot about Jesse's spirit, and it has been a huge honor for us to be involved." Jesse's mother remembered Jesse as a thinker, someone who would sit and listen quietly before sharing his opinions. "We miss him very much, but I feel very blessed," she said.
High School Grad Leaves an Inspiring Legacy
In June 2006, 18-year-old Travis Britt graduated from high school. For most seniors, this day would be a cause for celebration. But for Travis, it was especially bittersweet. “Graduation is a big deal for a lot of people, going onto the next step, getting jobs, starting families,” he said. “To me, it's great I finished school, but I’m really not going on to anything.” Travis was a star football player, a drama performer and one of the most popular and likeable kids in high school. He graduated one year after he was diagnosed with Ewing's sarcoma. “Whenever he's in a room he just lights up the room,” said his friend Danny Lindgren. “He loves life, he loves everyone around him,” said another friend, Aly Palsson. “He's honest, he takes the best out of every single situation and he can make anyone laugh.” So when Travis was diagnosed with Ewing’s Sarcoma a year ago, the news hit his family and friends hard. “It was in my back, in my hips, in my ribs, in my chest, my leg and my skull, so, I knew that I was in for a rough battle,” he said. “I told him I would trade him places numerous times throughout this,” said his mother Teresa Britt, “and he says, ‘I wouldn't let you. He said, you couldn't handle it, mom.’" Cancer may have sidelined his promising football career, but not his determination and spirit, despite months of aggressive treatments. “You have to be positive or else you're not going to make it,” he said. “I don't ever remember him talking about or being worried about his mortality,” said his father, Bob Britt. Travis had always dreamed of going to the Superbowl. In February, that dream came true, thanks to the Make a Wish foundation. Travis had one more wish -- to be cancer-free. But, in June, he learned his cancer had returned. Again, he wasn't going to let it get the best of him. “It's just something you have to do,” he said. “When you get news like I’ve received in the past couple years you just have to buckle down and realize what's important in life.” “He came back to callbacks the same day he found out the cancer was back and just went after it,” said his drama teacher Jenny Gajewski. Travis went after and won the lead role in the school musical Bye Bye Birdie. But before taking center stage, Travis rehearsed the hardest and most important performance of his young life. “His main goal in working through his graduation speech and everything he does in the theater is about helping people gain something from what's happening to him,” said Grajewski. This is what Travis said in his speech on June 17, 2006:
“How you react when you learn you have only 6 months to live? How do you react when you find out you won't be going to college with your friends and watch the kids you grew up with become adults? How do you react when you find out you won't be getting married and starting a family the way you had dreamed about doing? How do you react? On June 17, one year ago today, I was diagnosed with Ewing’s Sarcoma. In the past years I have gone through 10 months of the most intensive chemotherapy they've been able to give cancer patients which caused me to lose my hair, shed 50 pounds and be force fed through a feeding tube in the my nose for three months. After facing all these challenges in the last year, I found out on April 23 that I was cancer free. That excitement was short-lived. On June 6, 2006, my doctors told me that my cancer had returned. This time there is no cure. How did I react to all this? I lived in the moment. I didn't sit and dwell on the fact that I might not live. Instead I lived every moment like it could be my last. I will continue to live in the moment for every moment I have left. I challenge every single one of you to do the same for as many moments as you have. What I have learned in the past year is that family and friends are the most important pieces of life. As I stand up here today and look out at all these faces, I thank you for all the support and love you have shown me in the last 12 months. Life is a very fragile thing. It can be taken from you at any moment. I feel fortunate that I have the knowledge of knowing that my time is limited and that I need to live the rest of my life to the fullest and make as many memories as I can. So, as my final challenge to each of you, live your life and make memories with the ones you love. Thank you.”
On March 27, 2007, Travis lost his battle with cancer.
Wrapped in Comfort and Healing With Homemade Shawls
When you're sick, when you're all alone in the middle of the night and you're scared, you can think about how you're going to die or how you're going to live. Gwen Burton chose the latter. Sometimes she says cancer made her "a chosen one." Because instead of killing her it's made her more alive than ever. "Cancer can take us to a different level of life," she says. "I learned more and more about what life is all about and more and more about what life has to offer." And that is why Burton, who is 50 and lives in Birmingham, Mich., is making shawls - first thing in the morning, late in the afternoon, between trips to the doctor. She started last fall. A friend showed her how to cut them from the bolts of fabric, how to pull the threads into fringe, and how to turn a boring piece of fabric into something beautiful and memorable. No two shawls are the same. Burton gave some of her first wraps to her girlfriends. Every so often Burton sells a shawl - prices start at about $150. But mostly she gives them away, more than a hundred so far. "I just love giving to people who're not really expecting to get anything and seeing them rejoice in receiving" - to other friends, including her doctors and members of her cancer support groups. Driving along in Detroit one chilly day, Burton saw a woman without a coat. She pulled over and gave her a shawl she had in the car. She hopes the woman kept it because the shawls aren't only warm, they're comforting, like a hug from a dear friend. They make you feel like somebody cares. "When I wear my shawls, I feel grand," Burton says. "I feel protected. I feel secure."
People who've just met her, who don't know a thing about her cancer, often mention her smile. The way it's so infectious because it's so genuine; the way it makes her eyes twinkle. You see it when she talks about her son, Spencer Burton-Webb, 22 - she and his father divorced long ago - who's about to graduate from Morehouse College in Atlanta. "I'm so happy I'm living ... I've waited for this moment for my son," says Burton. "I really wanted to be able to beat this cancer and be able to celebrate with my son."
In 1998, Burton came down with a cough. "I would start coughing and it would hurt," she says. "I would just cough, cough, cough." The diagnosis: angiomyxoid sarcoma that settled in her genital area. She was frightened. She cried. She worried about her son growing up alone. Then she had surgery to remove the tumor. In 2003, the cancer came back. More surgery, and something new: chemotherapy. It worked. "It's an ongoing battle," says Burton, who considers herself in remission. "Some people let cancer get the best of them. I refuse to let cancer get the best of me." When Burton is at her kitchen table, sewing one of her shawls, working at her own pace, smoothing the nubby fabric with her hands, she is serene. She is living in the moment, not worrying about past cancers or anticipating future problems. All that matters are her shawls. And when she gives them away, she gives away part of herself. As far as she's concerned, that's what life is about: sharing. It is what will keep her alive forever. Because long after Burton is gone, her friends will smile about the shawls she gave them for her birthday and the ones she left on their doorsteps and they'll pull them around their shoulders and share a tight embrace.
Blairsville Teen Inspires Family, Iraq Soldier Even After Death
Jessica Kurnocik had several wishes before she died of cancer just before her 15th birthday. She didn't want her parents, Bill and Tracey, to cry any more. She wanted them to adopt a baby girl so her brother Andrew, 15, would have company after she was gone. And she wanted to donate her corneas to her neighbor, Jeremy Feldbusch. Feldbusch, a former Army Ranger, was blinded by enemy artillery in April 2003 in Haditha, Iraq. "She was so far beyond her years," said Feldbusch, 27. Feldbusch never received Jessica's corneas. His optic nerves were too severely damaged for the surgery to be effective. Nevertheless, Feldbusch said Jessica continues to inspire him. "She made me see more with my heart than I ever could with my eyes. She helped me move forward," Feldbusch said. The friendship was an unlikely pairing — the elite soldier stands 6-foot-4, a foot-and-a-half taller than Jessica was. While he was recuperating at an Army hospital in Texas, Jessica sent him her rosary beads blessed by the pope. When Feldbusch returned to his home town, Jessica rode with him in a Humvee during a parade the town held in his honor. "We hung out with one another. We had fun as friends do," he said.
Until 2001, Jessica appeared to be a healthy child who loved gymnastics, cheerleading, horseback riding and shopping. When she complained of pain in her groin, her family thought she pulled a muscle in gym class. The pain grew worse, to the point where Jessica could barely walk. Her parents took her to a pediatrician, and tests revealed a mass near her bladder. She eventually was diagnosed with synovial cell sarcoma. Her doctor at Children's Hospital of Pittsburgh, pediatric oncologist Dr. S.J. Orlando, keeps a framed photograph of Jessica in his office. "She was one of the special kids," he said. Orlando began an aggressive regimen that included radiation and chemotherapy. The girl's persistent high spirits moved him, he said. "Sometimes you form a bond with a youngster. They respond to you and you respond to them," he said. Kylee Longevitch, of St. Clairsville, Ohio, met Jessica at Children's Hospital. Longevitch suffered from Crohn's disease, an inflammatory affliction that attacks the intestinal tract. "Nobody at my age understood what was happening to me. Meeting her was the best thing ever. Jessica had so much unconditional love," said Longevitch, now 17. Treatment was expensive, and some experimental drugs weren't covered by the Kurnociks' insurance. They took out a third mortgage on their home. Neighbors held bake sales and car washes; the fire department and high school sponsored fundraisers. On the night of April 17, 2004, Jessica Kurnocik died in her bedroom, surrounded by family and close friends. Orlando attended the funeral. Feldbusch was a pallbearer. "If it wasn't for the strength she gave me, I would have given up," said Feldbusch. Jessica's final wish was that her parents start a foundation to educate doctors and help others with synovial cell sarcoma. Last summer, the Kurnociks founded the Jessica L. Kurnocik Charitable Foundation, which they run from their two-story home. They are planning a Nov. 10 event to promote the foundation. Feldbusch sits on its board. "Jessica didn't want other kids to go through what she did. She wanted us to reach out and help other families dealing with the same thing," Bill Kurnocik said. Another of Jessica's wishes came true. The Kurnociks adopted a baby girl from Guatemala last year. Anna Marie, now 14 months, is dwarfed by the family dog, a St. Bernard named Harley. Tracey Kurnocik has quit her secretarial job at the St. Anne Home, a Catholic nursing facility in Greensburg, to run the foundation. Bill, a supervisor at the Homer City Generating Plant, spends most of his spare time lining up sponsors for the November gala and dealing with a heavy load of paperwork. The Web site is jessicaskids.com. Jessica Kurnocik's grave is on a hillside overlooking a small valley and a scattering of industrial buildings on the outskirts of her town. Bill and Tracey Kurnocik will be interred in the same mausoleum someday. Bill Kurnocik placed a bench there and planted an almond tree and butterfly bushes. He visits every day. A passage from the Bible is emblazoned across the top of Jessica's tomb: "There are, in the end, three things that last -- faith, hope and love, and the greatest of these is love." "It was her favorite," Bill Kurnocik said. "Jessica had a tremendous amount of faith."
Boy’s love of golf and life drives outreach
Nicholas Marchitto Jr., 10, is definite about about his future where a career is concerned. The fourth-grader has his sights firmly set on joining the PGA tour. Six years ago, however, Nicholas’ future was imperiled by a diagnosis of sarcoma that left him with a 3-pound abdominal tumor and had spread to a lung. But today, he is a healthy and happy and has been in remission for almost five years. Nicholas radiates a joyousness that touches everyone he encounters, according to family and friends. Since his recovery, the Cape Coral, Florida resident has played a key role in the fourth annual Barbara’s Friends Charity Classic Golf Tournament at Lexington Country Club. Barbara’s Friends is a Fort Myers-based charity that has raised more than $6.7 million for the children’s pediatric cancer fund within the Lee Memorial Health System since its inception 12 years ago, explained its chairman, Frank Haskell. On March 11, Nicholas marked his fourth year joining other golfers for the shotgun tournament. The weekend-long Barbara’s Friends Fundraiser included a Las Vegas gaming night and silent auction, as well as the golf tournament and raised roughly $140,000 for the charity, said Al Kinkle, the golf course’s general manager.
Nicholas’ mother, Sherry Marchitto, said prospects were grim when her son was first diagnosed at 4 years old. “He was at stage four,” she said. “We were given no hope.” Sherry Marchitto said Nicholas endured the highest doses of chemotherapy and radiation allowed for someone his age and maintained a positive attitude and a determination to overcome throughout the ordeal. “He was just a focused child before he was sick and after he was sick,” she said. “He just went with what he had to do. He just has a real strong sense of well-being and he shows that.” Nicholas’ interest in the sport he loves never wavered, she said, pointing to the fact he would come home from chemotherapy sessions just to swing a club and even had a portable putting green in his room so that he could practice. “He’s just a good kid,” said his father, Nicholas Marchitto, Sr. “He’s good natured. “He never once did any kind of crying during his treatment and the love for the game of golf helped him get through this ordeal.”
In recalling his illness and treatment, Nicholas said he gained an appreciation for how precious life it. He also recalled the friends he made while being treated at HealthPark Medical Center. “It was fun, but hard at the same time,” he said. Kinkle credited Nicholas with showing incredible courage when he was ill and for his sunny disposition whenever he visits Lexington, where he receives golf lessons from his son Chris. “Nick has been here helping us with these events and a big part of the success of the events is Nick being here with his great personality,” he said. “The members here have really taken a liking to Nick and look forward to seeing him. He’s come a long way since we first met.” He said the annual fundraiser is in its fourth year and the bulk of the donations come from the Lexington community and are augmented by contributions from local sponsors. Haskell said he was thrilled, as always, with the response to the fundraiser. He also said his exposure to child cancer patients has had a profound effect. “I think the thing that impresses me about children like Nicholas, is they have a very difficult challenge in life, but they face a life of uncertainty with hope and they tend to strive, despite their illness,” he said. “They’re just wonderful, wonderful children. It’s not only Nicholas. Children who have cancer are special children.”
Survivor
Goaltender Leland Irving was in the midst of something Western Hockey League followers had never seen before. He was in a slump. Irving was letting in goals on shots he usually gobbles up like an afternoon snack. He was putting passes right onto the sticks of opponents as if he was trying to boost his assist total. He was even pulled less than eight minutes into a game. This was unfathomable from Irving, a first-round NHL draft pick who is the calmest, steadiest and most even-keeled member of the team. Observers weren't sure what to make of it. There were even whispers of a possible goaltending controversy. But on Irving's adversity scale, a rough patch in goal barely warrants mention. Adversity? Try more than a year's worth of chemotherapy at the tender age of 8. As a cancer survivor, Irving has overcome far greater challenges than giving up a few soft goals. And the way he sorted out his game heading into the playoffs bears just the tiniest bit of resemblance to the child who overcame that life-threatening disease. "I'm almost thankful for being able to experience that and come through a survivor in that situation," Irving said. "It lets you see a whole different perspective. You kind of look at life through a bigger picture, and when you come upon different points of adversity you're able to overcome them easier, it seems."
Irving faced his greatest challenge when he was 7. His parents found a small bump above his left ear that they originally thought was some sort of insect bite. But when it didn't go away, they had it checked out by doctors. Irving was subsequently diagnosed with rhabdomyosarcoma, and the bump turned out to be a marble-sized tumor. The survival rate for rhabdomyosarcoma is about 70 percent. What ensued was surgery to remove the lump and 13 months of chemotherapy treatments to ensure all the cancerous tissue was gone. That's a lot to heap on the shoulders of a young child. "It was tough," Irving recalled. "A lot of sick nights and days where you're not very strong at all. But I had my family and friends supporting me all the time. "Being that young, I didn't fully understand what was going on," Irving added. "I was able to keep a smile on my face and live life almost like any other 8-year-old. It wasn't until I was in my high school years when I did a school project on it that I realized what could have become of that. I'm very thankful they were able to catch it soon enough." During that time Irving displayed many of the traits that now make him such a successful goaltender: courage, calmness under pressure, the ability to bounce back. "I couldn't have asked for a better kid to go through that with," Irving's mother, Karen, said. "I'm still amazed at how well he handled everything thrown at him. As long as we were able to explain everything they were doing to him, he took it in stride." It was also during this period that Irving's dedication to hockey became apparent. Despite ongoing chemotherapy, Irving insisted on continuing to play hockey. "You could see that he was weaker, so I tried to talk him into doing something other than hockey," Karen Irving said. "But I couldn't talk him out of it." That season he missed just one game and one practice because of low blood counts, and at the end of the season he was named the team's MVP because of his dedication to the cause. All of which illustrates why it's no surprise Irving was able to snap back into form in time for the playoffs.
For a while that was in doubt. In eight starts between Feb. 10 and March 2, Irving went 3-3-1-0. He gave up 26 goals during that period, a rate nearly double his goals against average for the rest of the season. That stretch culminated with being pulled just 7 minutes, 24 seconds into a home loss against Portland, the shortest start of his Everett career. "As a goaltender, if you're struggling you're going to know about it," Irving said. "It's a position where everybody sees your mistake. Through stretches like that you've just got to battle through it and keep working hard. For me it was just a matter of time before things got back together. I don't feel I changed a lot; I kept my routine the same. It's just some nights you don't get the bounces." Irving busted out of his slump with a shutout against first-round opponent Spokane on March 3. Since then he's been back to his normal reliable self, giving up just four goals in his final five starts, including three shutouts. "During the course of every lifetime and every athletic career, it's impossible to be perfect," mused Everett coach Kevin Constantine, who said he was never concerned with Irving's performance. "But he's as close as they come in terms of what he's been able to do for us. If you look at people's past it's a pretty good predictor of the future, and over three-and-a-half years with us he's been pretty consistent." And for Irving, a slump just isn't that big a challenge to overcome. "All in all it's just a game," Irving said. "It's one we all play very passionately and take a lot of pride in each and every shift. But there's way bigger things in life you have to get over."
'Music man' wins top teacher honor
Music teacher Brad Schoener has barely skipped a beat since he was diagnosed with leiomyosarcoma early 2004. Despite two major and three minor surgeries and three years of chemotherapy life hasn't stopped for Schoener, age 44. The 23-year band director at Delaware County's Upper Darby School District was one of five music teachers nationwide recently named Teacher of the Year by Mr. Holland's Opus Foundation. He will be honored at a New York Pops concert at Carnegie Hall in April. The foundation, founded by Michael Kamen, composer for the 1995 movie, "Mr. Holland's Opus," donated $1.6 million for about 3,000 instruments to schools around the country last year. The teacher of the year award is given in memory of Kamen, who died in 2003. Other than recovering from surgeries and taking off Friday afternoons for treatments, Brad Schoener has missed only one day of school since he was diagnosed with the cancer that attacks the colon, liver and pancreas. He continues to write and publish music for other school band directors and to be active in the music program at Westminster Presbyterian Church in West Chester and in his son's Boy Scout Troop. He has a son, Bradford Jr., 15, and a daughter, Lauren, 17. But he has put on hold his career performing with numerous professional groups because sometimes when he blows his trumpet, he blacks or "grays" out. He teaches at three elementary schools, where the bands, with about 600 students, have tripled in size since he started working with them in 1992.
Known as the "Music Man of Upper Darby," he came to the attention of the foundation when he received three MHOF grants in the last two years, providing 34 instruments for students in the district on the edge of West Philadelphia. "All three of my schools are in the lower socio-economic level," he said. "Fifty to 85 percent of the students receive free lunches and most of them live" in housing subsidized by the federal Department of Housing and Urban Development. "Many students sign up for band, but their parents can't afford to rent, let alone buy, an instrument," Schoener said. "Without the grants, some students would not be playing." Schoener works under less than desirable conditions, as none of the schools has a band room. Practice is held in makeshift spaces, some without room for chairs or time to put them up and take them down. And yet Schoener inspires his students with his upbeat attitude. After going through a litany of things they don't have, he concludes: "Guess what? That doesn't mean you can't be awesome players."
Since the foundation's award was announced on Jan. 31, Schoener has been featured in a Philadelphia Inquirer article and on Fox News in Philadelphia. Schoener had an epiphany on an early morning walk one Sunday shortly after his diagnosis. "A thought crossed my mind: I don't think God is finished with me," he said. Then he went to church, where the pastor said in his sermon, "you've got work to do; you're not finished yet." "Chills ran down my spine," he said. When Schoener learned he would lose his long mane of hair from chemotherapy, he decided to shave his head and use it as a learning tool. He allowed students who played a difficult scale or drummed a complicated piece to sign his scalp. Schoener said he is "feeling great." "Three years ago, my prognosis was very grave," he said. "But I'm still here. My condition is stable. I'm happy to go to work. I can't wait to get in and do things for my students." Receiving a national award in the midst of being treated for cancer has "sweetened" his life, he said, along with the outpouring of love and support he has received from his students and colleagues, family and friends. "I have to say I wish, if I could give a gift to other teachers, I would like them to receive what I have received," he said. "I would like them to see the fruits of their labor." During an interview with his students by a reporter writing about his award, he heard all he needs to hear. "The reporter asked what the kids have learned from me," he said. "They said they have learned to overcome obstacles and make the most of what they have.”I hope to get that through to all my students."
Miracle Champion Child on a Mission
It took the entire community at the Alberta Children’s Hospital to save the life of this year’s Children’s Miracle Network Champion Child, said hospital brass in February. As nine-year-old Kelly Hogarth delivered an impromptu hug to Dr. Doug Strother, who was key in defeating her cancer and giving her a new lease on life, the bubbly youngster was named this year’s official ambassador for the city’s children’s hospital. It was her courage and ability to deal with adversity that prompted hospital staff to choose Kelly as their ambassador, said Strother. Kelly was five years old when doctors discovered a slight swelling in her face. Upon being diagnosed with Ewing’s sarcoma, the hospital had to resort to several medical disciplines and experimental therapies, while Kelly had to toughen up and go through 11 months of intensive treatment. Kelly underwent 14 rounds of chemotherapy administered through a tube in her chest before the tumor was removed by cutting out a part of her jaw. A chunk of bone from her leg was used to replace the missing piece. “I don’t think it’s sad that I got cancer because I was able to come to the Alberta Children’s Hospital to get better,” said Kelly, who is now cancer-free. “Because I was so young, I don’t remember a lot of the bad stuff and I like it that way.” Kelly’s can-do attitude and fortitude meant the entire ordeal may have been harder on her family than it was on her, said her mother Lori. “With Kelly, anything you say she can’t do, she will,” she said. “So when it was a low survival rate, she turned that right around. “When they said they weren’t sure how successful the chemo and the surgery would be, it was all perfect.” It was her strength and charisma that touched and inspired Strother to nominate Kelly for the year-long post. “No matter what we threw at her, she never caved in to despair,” said Strother. Kelly, who freely disperses affection and is quick with a smile, will spend the next year traveling the continent with her family, sharing her story and talking about what the hospital means to her. “We owe this hospital our daughter’s life so anything we can, we’ll do for them — we can’t give them enough,” said Lori.
Author Survives Disease to Summit Everest
Sean Swarner can't help it. Five minutes, sometimes 10, before he reaches a summit of one of the world's highest mountains, the waterworks get going and his goggles start fogging up. "I just cry," says the 32-year-old Boulder, Colorado, resident. It's the flags. Six so far, one planted on the highest mountain of each continent. Each bearing the names of those battling cancer, the survivors, the ones who lost the fight. Each carried close to his heart as he made his way to the world's highest points in the mostly startlingly beautiful, and at times inhospitable, reaches of the Earth. The tears, they've always come, ever since he ascended to the world's highest point on May 16, 2002 -- becoming the first cancer survivor to climb Everest. To earn that distinction, Swarner battled and beat not one, but two aggressive cancers. Cancer struck when Swarner was 13 years old. Its first sign came during a lunchtime basketball game with him driving to the basket when a "snap" comes from his left knee. The diagnosis: Hodgkin's disease, a cancer of the lymph system, and three months to live. Through the horrors of chemo and other treatments, Swarner somehow finds and holds on to his will to survive. He fights his way into remission, only to be diagnosed with Askin's sarcoma at age 15. This time, it's a tumor the size of a golf ball in his right lung. This time, the doctors give him two weeks to live. This time, he becomes the only known person in the world to have been diagnosed with both diseases -- and to survive. He comes away with the deepest appreciation of life, a sense of joy and, ultimately, a mission to encourage others with cancer. Swarner says he wanted to shout from mountain tops about the potential of the human body and spirit. "What better platform than the highest mountain in the world? To me it seemed like a logical fit," he says during a telephone interview. That idea would lead Swarner and brother Seth to create the nonprofit CancerClimber Association and to set their sights on the ascent of 29,035-foot Everest -- despite the fact that Swarner had no climbing experience, no funding and just one fully functioning lung. But he'd survived cancer, twice, so why not jump in with the innocent spirit of a child? "People are afraid to try things and afraid of failing and ... not look(ing) professional," he says. "When you're a kid, you're not afraid to try anything. It's no big deal for kids because they don't think about the ramifications. As adults, I think we lose that." And that's how with some training, some climbs on 14,000-foot peaks and some money from sponsors and from cashing in his life's savings, he ends up in Tibet on his way to the world's highest point. Swarner details the fight for his life and his ascent of Mount Everest in his book "Keep Climbing: How I Beat Cancer and Reached the Top of the World" (Atria Books). His descriptions of his ascent are gripping and humorous. He sprinkles the word "fun" into his story, which seems an odd juxtaposition for anyone talking about a mountain infamous for its deadly avalanches, 100-mph winds and life-threatening loss of oxygen. "If you're not enjoying what you're doing what's the point. I just don't want that to happen to me. I don't want to deal with any 'what if' questions," Swarner says. There would be no what-ifs for Everest. Or the five other mountains on five other continents that he has climbed so far -- Aconcagua in South America, Kosciusko in Australia, Elbrus in Europe, Kilimanjaro in Africa and, on Jan. 25, Vinson in Antarctica. They're part of his quest to be among the few climbers to bag what's known as the "Seven Summits." His seventh and last climb is the 20,320-foot Mount McKinley in Alaska. The summit goal is May 16. He'll be done, then, with another feat in a long line of impossible ones. But he hopes to continue inspiring others, including those who read "Keep Climbing." "Everybody has it within themselves to do amazing things," Swarner says.
Teen Living with Cancer Reveals Bravery, Beauty
At first, Angela O'Laskey seemed a bit shy in front of the camera. She stayed a little stiff when the photographer asked her to spin around and let her long scarf flow. But by the time her two sisters joined her, it seemed more like a party, and 14-year-old Angela, who has cancer, began to relax. "For adolescents, body image is very important," said Lauren Spiker, who started a foundation to help teens living with cancer. "We want to do anything we can to make them feel beautiful inside and out." On a recent Friday, that included having Angela and her sisters get their makeup professionally done and posing for glamorous pictures. A volunteer film crew also took footage for a documentary called The Faces of Teen Cancer. Three teens will be featured, including Angela, who lives in Greece and was diagnosed with Ewing's sarcoma in January. Helping with the documentary sounded fun, Angela said as she put a stylish cap on top of her wisps of hair. "And I thought (today) would make me more comfortable with how I look." Two months ago, Angela lost her hair. Since then, people at the mall stare and she's heard all kinds of comments. She's weird. She has no hair. She's ugly. Her friends and her sisters help, especially the youngest sister, 6-year-old Melissa. "She tells me I'm pretty," Angela said as Melissa jumped and twisted for the camera and 15-year-old Audrey tried on a purple hat. "She tells me to be quiet if people are being mean. She's amazing." Of course, Angela and other teens dealing with cancer are pretty amazing themselves, said Spiker, whose 19-year-old daughter, Melissa, died from leukemia in 2000. Spiker started Melissa's Living Legacy Teen Cancer Foundation in her honor. "I hope and pray that years from now, Angela will look at these pictures with such pride at what she's been through," Spiker said.
Son’s Cancer Inspires Mother To Help Other Families
Jennifer Weir was eight months pregnant with her son, Kevin, when she attended her first fundraising event for the Children's Cancer Fund. She and her husband, David, went to the silent auction back in 1998 at the invitation of a close family friend who's a physician. "I just thought, 'I don't know how those parents do it,' " said Ms. Weir, a Plano resident. "Seeing the children back then, I couldn't help but want to do something to help them. Never in a million years did I dream that we'd ever be in that situation." Little did this mother of three know that several years later, her family's world would forever change when Kevin, at age 5, was diagnosed with Ewing's sarcoma of the pelvis. Kevin was a healthy 4-year-old until one day he became lethargic, lost his appetite and developed fevers. The Weirs knew something was wrong. Doctors were trying to determine what the problem was, but he wasn't referred right away to Children's Medical Center Dallas and the cancer wasn't detected immediately. Continuing to seek answers, the family even traveled to Houston to see a pediatric rheumatologist. A bone scan revealed a cancerous tumor on his right pelvic bone. He first underwent five rounds of chemotherapy at Children's Medical Center to shrink the tumor enough to where surgeons could remove it and part of his pelvic bone. After surgery, Kevin underwent 12 more rounds of chemotherapy, which took a toll on his young body. His last chemotherapy treatment was in September 2004.
During it all, the Weirs, who also have daughters Michelle, 16, and Laura, 12, received an outpouring of support from hospital staff, Kevin's school, friends and the community. Today, Kevin is a vibrant 8-year-old who loves playing soccer and baseball almost as much as he loves Legos. He is currently cancer-free, but the treatments left him with serious medical problems called "late effects." He has cardiomyopathy, a weakening of the heart muscle brought on by the chemotherapy. He takes heart medication and may require a heart transplant someday. The second-grade student also has orthopedic problems, chronic pain in his leg and partial, permanent hearing loss, a side effect of the strong antibiotics prescribed during chemotherapy. "He's made a big difference," said his sister Laura. "He's come a long way. He was strong at times the rest of us were having a hard time."
This life-altering experience inspired Ms. Weir to continue helping other families fight the disease. She is passionate about raising awareness of the need for more advanced, less toxic treatments. Her goal is to fund research to develop more targeted cancer therapies. "You can't go through something like this and not be changed forever," Ms. Weir said. "It's such a roller coaster ride. I felt like I had to do something." That "something" is fundraising and supporting other parents fighting childhood cancer. She serves on the Children's Cancer Fund board of directors, and she and her family raise money for Ewing's sarcoma research at UT Southwestern. She serves on the review board and writes articles for ESUN, an electronic sarcoma newsletter put out by the Liddy Shriver Sarcoma Initiative. She's also a member of Children's Medical Center's Patient and Family-Centered Care Committee. Ms. Weir is co-chair of the CCF's fundraiser "Rays of Hope and Sunshine" held on March 30. She will speak at the event and Kevin will participate in the luncheon and fashion show along with 80 other pediatric cancer survivors and 41 children still battling the disease. Despite Kevin's medical problems, the Weirs count themselves fortunate that their son has beaten the cancer so far. "Right now, even though he has heart problems, he is doing pretty well," his mother said. "Things are never going to be the same. We have to make the best of what we have."
V4N2 ESUN Copyright © 2007 Liddy Shriver Sarcoma Initiative.