December 2009

Stories of Courage and Hope

An ESUN Resource

Celebrating Jordan's life

Jordan Paganelli was diagnosed with Alveolar Rhabdomyosarcoma (ARMS) stage IV on January 11, 2008. Young Jordan was 17 when he passed away 22 months and 9 days later, on November 9, 2009. 

Baynet quotes Jordan's father saying of his son, "He was the very definition of grace, courage, and strength under pressure. He was the purest, most magnificent embodiment of selflessness and love that I have ever witnessed. His calm and humble strength radiated positive energy and love on everyone around him." Regarding the end of life decisions his son made, Jordan's father says, "In the end, despite the knowledge and unavoidable reality that he was dying, he chose to live his final days by celebrating with his family and friends, soothing our fears, and giving us personal items to remember him. It is and was the supreme privilege of my life to call myself his dad."

In accordance with Jordan's wishes that his remembrance not be a sad one, the family, with the support of Jordan's school and the community, held a Life Celebration Rally.  Baynet has posted Video of the Celebration held at the Leonardtown High School Football Stadium.  There, hundreds gathered to share memories and celebrate Jordan's life the way he wanted them to.

Jordan's treatment included the ARST0432 chemotherapy protocol and 12 weeks of radiation (7 body/torso, 5 head).  The five year survival rate for ARMS is low – 20%.  The family used a Caringbridge website to keep family and friends updated during Jordan's treatment and to post their thoughts and feelings leading up to and following his death. 

 

Teen's Sarcoma Gives Her Perspective

Julia Janes can't remember a specific game when she began to feel pain in her lower left. She was on the Oak Forest High School girls' soccer team and just assumed she had been kicked at some point. What caused the pain didn't matter at the time. The then 15-year-old was being called up to the varsity squad for a regional playoff game and she was determined to play.  Janes was also an honors student and played flute in the school's marching band.

A doctor diagnosed the injury as a deep bone bruise just before the regional playoff game. But after the season ended the pain was getting worse. In July a pediatric orthopedic surgeon ordered an MRI, and Janes was diagnosed with Ewing's sarcoma. Julia and her family felt she was lucky though because the cancer was localized to her tibia.

Doctors moved quickly to treat her. First she was put on a seven-treatment course of chemotherapy to kill as much of the cancerous growth on her tibia as possible. Then she had surgery. Doctors could not save her tibia, so she had a complete knee replacement and part of her tibia replaced by a metal rod. The good news the family received was that the tumor removed from her leg was completely dead, when 80 percent of it killed would have been extremely fortunate. Janes will go on another seven-treatment course of chemotherapy to eradicate any stray cancer cells that may have lingered.

The surgery has very likely ended her soccer career. But her illness has given Janes a new perspective. "I learned to appreciate things more, you know, the little things that other people take for granted. It's changed my outlook as far as what's important," she said. Now Janes never takes simple things for granted such as walking her dog or taking a shower. And she has a long road of physical therapy to endure, along with her second course of chemotherapy, before she can walk again.

But the family is buoyed by the good prognosis doctors have given her and by the unsolicited support they've received from the community, friends and family. Mary Beth Sexton, principal at Arbor Park Middle School where Janes attended, helped organize a fundraiser at the school for the family last week to help them with mounting medical bills. Members of the marching band at Oak Forest High School came to her hospital room at Hope Children's Hospital in Oak Lawn to play for her during Homecoming week since she couldn't attend. Janes' father Jeff, a teacher at Andrew High School, said an acquaintance heard about his daughter's illness and just walked up to him and offered a check. "This entire community is an incredible community. Obviously family, but friends, neighbors, my community at Andrew, they have just pulled together to support someone like I never realized could happen. We thank everyone for everything they've done for our family," he said.
Janes has realized this illness will restrict her from certain things for the rest of her life. But she says she has plenty of interests and activities to keep her busy. She's choosing to focus on what she will do in the future rather than what she can't.

 

After Beating Sarcoma, Girl Continues Backpack Effort

Tatum Parker will head back to her third-grade classroom in a few weeks. She hopes to return to normalcy since being diagnosed with Ewing's sarcoma, just before age 6. Except for attending the first day of school this year, she hasn't been to Spring Mill Elementary since last fall, when cancer returned in her right lung. She's been tutored at home. But now Tatum, age 9, reports, "I'm cancer-free finally."

Her health challenges have made her a more mature and compassionate young girl, said her mother. Along with six other Riley Hospital for Children patients, Tatum was recently honored as a Riley Champion for the nonprofit organization Tatum's Bags of Fun she started under the auspices of the Colorado-based Gabby Krause Foundation. She and her parents have made and distributed more than 300 backpacks filled with games and activities to children at Riley and Peyton Manning Children's Hospital at St. Vincent. Recently, they've gotten corporate and individual donors to help with the costs. "It was sad because a ton of kids (in the hospital) don't have their parents with them and have nothing to do," said Tatum. And she hopes to continue giving out backpacks again soon.

 

Climbing Over Cancer

When he was 13, Sean Swarner was diagnosed with advanced stage IV Hodgkin's lymphoma and given three months to live. He went into remission at the age of 14 only to be diagnosed with Askin's sarcoma, two years later. After removing a golf-ball sized tumor on the side of his lung, doctors gave him just 14 days to live. "All I thought of was what I went through the first time and how I didn't want to go through it again," Swarner said. "I only had two choices, though, one of which was fighting for my life — and guess what I chose?"

More than 20 years later, the 35-year-old cancer survivor has gone on to climb Mount Everest as well as the tallest peak on each continent, completed the Ironman Championship, and wrote a book. When he's not breaking records, he visits schools and hospitals to share his inspirational story.

Swarner recently spent a November afternoon telling his story to students at Newburyport High School and visited fellow climbers at Metro Rock as a guest of Alliance Oncology at the Newburyport Cancer Center, which invited Swarner to town as part of its grand opening yesterday. Officials with the Newburyport Medical Center felt Swarner had a message that could resonate with young people, whether or not they had ever been touched by cancer.

At an age where most teenagers are stressed about finding dates to school dances, Swarner was being told to write a will, and driving 90 minutes to chemotherapy and radiation treatments. "I was 13 going on 40," Swarner told students. "It was then that I understood the true meaning of life, and that I need to try to squeeze as much out of life as possible."

Swarner realized that he wanted to do something monumental to inspire other cancer patients. And what better way than climb the tallest mountain in the world? "The people going through treatment are the real climbers in life," Swarner said. "If they can fight for their lives, I can put up with some wind."

Students listened as Swarner spoke of his journey up and down the 30,000-foot mountain, which he documented in his book "Keep Climbing." He showed photographs and spoke about living in temperatures of minus-60 degrees for days on end, facing snowstorms with up to 120 mph winds with only one fully functioning lung, seeing a friend fatally tumble down the mountain, and what kept him going, despite all the times he thought about turning back. "I had gone so high that I could see the curvature of the horizon," Swarner said. "On my right was a sunset with the most beautiful pinks, reds, blues and purples, and the stars were at eye level on my left. I realized: I'm actually going to make it to the top of the world." On May 16, 2002, at the age of 27, Swarner became the first cancer survivor to reach Mount Everest's summit. "Every single person that's ever been touched by cancer was there with me when I reached the summit," Swarner said.

He has since gone on to climb the "Seven Summits," the highest mountain on each continent, including Africa's Mount Kilimanjaro, which he now climbs every summer as a fundraiser for the CancerClimber Association, which he and his brother Seth founded in 2001. After having completed the 2008 Ford Ironman World Championship in October, Swarner has his sights set on climbing in New Zealand and Indonesia, as well as trekking to the North and South poles. Along his journeys, Swarner visits hospitals, schools and other organizations to give hope to others affected by the disease.

"We should not worry about dying — it's going to happen; we should worry about living life to the fullest," Swarner told students. "The only person holding you back is yourself." Swarner told students that everyone has mountains they have to climb in life, and that true motivation has to come from within. "He has such an inspirational story," senior Jack Barry said. "I've learned that you shouldn't hold back — if you want something bad enough, you can get it."

 

Woman Spurs Cancer Fundraising Effort

When her younger sister was diagnosed with Ewing's sarcoma, Emily Enright got a sense of what it's like to have someone so young and so close to be diagnosed with cancer. "It turned out to be a misdiagnosis, and she really just had an infection that mimicked the cancer, but there was a solid month that I thought we were going to lose my sister," recalled Enright. "I know what that fear is like, and it's unreal. You could never imagine it unless you live it, and I know we were lucky." Despite the misdiagnosis, Enright was so moved by the experience that she wanted to continue to help those affected by cancer, especially youths. So when she heard of a 4-year-old cancer patient — a little girl named Alex Scott — who launched a lemonade stand to raise money to help find a cure for all children with cancer, Enright started a local effort to support the cause. Since her first lemonade stand, Alex's Lemonade Stand Foundation has evolved into a national fundraising movement with thousands of volunteers across the country carrying on her legacy of hope. To date, the registered charity has raised more than $25 million toward fulfilling Alex's dream of finding a cure, funding over 100 research projects nationally.

"When I heard Alex's story and how she inspired an entire nation to fight childhood cancer with a lemonade stand, I knew I had to be a part of her mission," Enright said. "I wanted to give all of the 13,000 kids in our country diagnosed each year a fighting chance, and The Lemon Lounge is my small way of doing that." Based in Thousand Oaks, California, the Lemon Lounge officially launched on Sept. 12 and has raised more than $1,300 that will directly benefit the foundation. "I wanted to start a local group because I noticed how few people knew about Alex's Lemonade Stand in our area, and this is my way of bringing Alex's Lemonade Stand to them," said Enright, who launched the local cause with her friends and family.

"I want to show people, especially young people, that it takes a lot of effort and persistence to get an important message across to a large group of people, but it isn't impossible," she said. "You always hear that it only takes one person to start something big, and I want this to be big. I have made it my mission to make sure Alex's message of hope is heard far and wide so that Alex's dream of finding a cure for childhood cancer will soon become a reality."

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Young Boy's Arm Bone Replaced Is Medical First

Four-year-old Mark Blinder is now throwing and catching footballs.  It is hard to imagine that just a few months ago Mark was barely able move because he felt so sick from chemotherapy. And now there is no indication that, as Mark says, his right arm is "special." Mark, who lives in Palo Alto, California, was diagnosed last year with Ewing's sarcoma that had spread throughout his entire upper arm bone. He could have undergone radiation, which would have prevented his arm from growing properly, or have the arm amputated. Instead, his parents chose an alternative approach — replacing his entire bone with a prosthesis that can be extended to grow along with him.

Doctors who treated Mark at Lucile Packard Children's Hospital say they believe it's the first time someone so young has had an entire upper arm bone replaced with a prosthesis. It's rare for a 3-year-old to develop a cancer like Mark's, and it's also uncommon for it to impact the whole bone, said his orthopedic surgeon, Dr. Lawrence Rinsky. "They don't make the parts for anybody that small, they've just never been made before," Rinsky said.

After chemotherapy, to eliminate the cancer completely, Mark's parents had to choose between radiation, amputation or a prosthesis. After many hours of discussion and research, they decided to opt for the untried surgery. "We decided, if there is a chance to save his arm, we'll save his arm," said his mother, Alla Ostrovskaya.

Doctors then worked with Indiana-based manufacturer Biomet to design the artificial bone. Rinsky remembered debating with the company's engineers in an effort to find the right balance between strength and size. "It has to be small enough to fit in, and sturdy enough to last for hopefully a lifetime, and it has to be elongating," Rinsky said.

The doctors had to remove his cancerous bone without touching it, carving it out within a layer of soft tissue to avoid spreading cancerous cells. Since the prosthesis was replacing an entire bone, doctors also had to find a way to sew it to soft tissue. Ostrovskaya remembered anxiously walking around Stanford Shopping Center for hours, getting occasional updates from the doctors. Finally, Rinsky called and said they should come back to the hospital, where he told them that everything went fine. After several months of chemotherapy, it appears the cancer is gone. As he grows, Mark will have a few minor surgeries so doctors can lengthen his artificial bone with a twist of a screwdriver. Mark still goes to physical therapy once a week. He can't lift his arm above his shoulder, and likely won't be able to write with his right hand. His artificial bone can only be extended so far, and his right arm will always be a bit shorter than the other. But he can run and play, and loves soccer and swimming, his parents said. "I think it was the right decision, but it was a difficult decision," said his father, Gene Blinder. "He's almost back to himself," Ostrovskaya said.

 

Women To Run Marathon To Honor Girl With Sarcoma

Twelve-year-old Kennedy Pepper wonders if she will have hair when she is old enough to attend the prom. The student lost her hair during chemotherapy to treat her Ewing's sarcoma. The cancer was found in her right thigh in 2008 during an exam and X-rays for leg pain. She has completed chemotherapy but is still under observation. Doctors had to remove part of the bone and replace it with a cadaver bone.

Her church family at Lindsay Lane Baptist saw her in the hospital, undergoing treatments, and coming to services on crutches. They grieved with her over the loss of her hair and rejoiced with her when it started growing back. "My daughter is her friend, and I think about the things my daughter can still do that Kennedy can't," said the church's pre-school director, Tammy Fleming. "Kennedy has a trampoline, but the doctors said she can't jump or put pressure like that on her leg. She'll never be able to use it again."

Despite these struggles, Kennedy remains a sweet and courageous girl. Her attitude has prompted Fleming and others at the church to compete in the annual St. Jude marathon through downtown Memphis and the St. Jude Children's Research Hospital campus. Fleming, 43, Kennedy's mother Joan Pepper, 42, and the church's assistant pre-school director Amanda Tedford, 31, will run the 13.1-mile, half marathon course. None of them has competed in a marathon before. They have been training since September to get into shape.

"I could barely run two miles when we started," Tedford said. "Now I'm up to 10 miles." Church member Christy Anderson, 41, is an experienced runner and will run the 26.2-mile course, along with church member Theresa Hagood, 42. About 10 members will do the 5K run.  "I am so proud that we are blessed with so many people at Lindsay Lane who are willing to give of themselves for others," said Minister of Education Sonny Schofield. " Our Sunday school motto is, 'It is all for Jesus, and it is all about others.' The members of this group are living examples of that motto."

The runners are willing to overcome the aches and pains to because St. Jude's treated Kennedy and will treat any child, regardless of whether the parents can pay. The marathon is expected to raise $2.5 million to continue the hospital's efforts. "It is awesome what they do," Fleming said. "They will pay for a patient and a family member to have lodging and food. No one is turned away." Tedford said Kennedy has remained strong during her ordeal, and their minor injuries from training can't compare to her experiences. "It has been amazing to watch Kennedy during this," Tedford said. "It has been both heartbreaking and inspiring in the same heartbeat."

 

Wanted: Front Bumper, Trunk Gasket - And Prayers

Tyler Shipman, 18 years old, loves restoring his 1986 yellow-and-black Pontiac Fiero. Tyler, "a total Fiero-head" and senior at Frazee High School, began experiencing severe back pain last summer. In early October, he was diagnosed with Synovial Sarcoma. After receiving two rounds of chemotherapy in Fargo, N.D., Tyler is home now, on hospice, with his parents, Jay and Daneele, and siblings, 10-year-old brother Carter, and 8-year-old sister Cassidy. He also has a 21-year-old half-sister, Tiffany.

After receiving the diagnosis, Tyler panicked about burdening them with his car-restoration project. On Oct. 29, he posted a plea on the popular Pennock's Fiero Forum website, under the heading "Got cancer now and looking for help. Hey guys, I have an 86 Fiero GT that I've been slowly fixing up ... and I'm just trying to find some way to get it restored before I pass. I love this car."

The first person to respond was far from Frazee, Minnesota. He was Sgt. Andrew Weigle, of Pennsylvania, serving in Iraq with an assault helicopter battalion. "Dude, I am sorry to hear about your situation. And I would have the same feeling about my Fiero ... I am going to have some time off when I get back home from this place in January. I MIGHT be able to convince the wife for a road trip to help you out for a weekend ... make a list of parts you need."

Others jumped in, with money, parts and prayers. "I am an auto mechanic and own a Fiero, so I know my way around cars," wrote one. "I have a nice Alpine CDA-9851 unit (MP3, Motorized Tilt Face and whatnot) to put in ...," wrote another. "I hope and pray for the best for you dude," wrote a third. A plan took shape. Fiero-heads in Minnesota, California, Florida and Texas would collect all the necessary parts, then gather in Frazee, and restore Tyler's car to mint condition. One of them was Chris Kliewer; Tyler's story touched him deeply. "I saw all these people willing to reach out and no one really knew how to do that," Kliewer said. He volunteered to handle Paypal transactions, which are now close to $1,500. Kliewer also started making calls to local businesses. The Detroit Lakes Tires Plus offered to install performance brakes. Local motels slashed their prices. Dave and Karen Gray, owner of Frazee Auto Body and Glass, covered the cost of painting the formerly white car yellow with black accents. Tyler felt good enough recently to come to the shop and pick out the paint chips himself, Karen said. "We're parents, too," Karen said. "If something like this were to happen to one of our children, we would find comfort in the well-wishes of people we didn't know well. It hits home and it hits pretty hard."

The car now sports new interior panels, a keyless entry, new leather seats, tinted windows and a rare original trunk gasket. "Somebody got their hands on the last two [gaskets] and is donating one," Kliewer said. A "Fiero guy" from Iowa is bringing up two newly built headlight motors for reliability down the road, he added. The "reveal" is scheduled for November 22nd at the Frazee High School garage.

Mother Daneele, 38, said the effort has been "mind-boggling. None of these guys has ever met Tyler, except for online. As many bad things as you hear about the Internet, it's also a really great way of having a bigger community than just what you live in physically." She laughs, admitting that she doesn't know a thing about cars, but is glad the focus on rebuilding Tyler's third Fiero is making her son happy. Her focus is to keep life as normal as possible for her family. "We have good days and bad days, but every day we just have to keep stepping forward," said Daneele, "There's no way for us to control what's going on around us. We try to ignore cancer as much as we can." They eat supper together, watch TV, play video games, attend band concerts and wrestling meets, "all those normal things." Last week, Tyler went with his dad to a gunsmith and sports store, using his walker. The outpouring has buoyed him. "I've been doing a lot more in the last week than in the last month before that," Tyler said. "I've been feeling a little stronger. I can walk around a lot easier."

Dad Jay, 40, who owns a tree service, is off-season now, allowing him to spend more time at home. He and Tyler, Daneele said, "are super close." Today, father and son are set to take a bittersweet spin. But Tyler feels only gratitude. "A lot of great people out there are helping me, doing all sorts of stuff for me," Tyler said. "It's just awesome."

 

Boy Fighting Sarcoma Is On Every Player's Mind And Helmet

When the Lake Highlands High School football team takes the field for the playoff game, every helmet will be emblazoned with a special sticker. And whether Will Morgan gets to root in person will be a game day decision. Will Morgan was diagnosed with Ewing's sarcoma a couple of months ago. The 11 year old's sore leg was initially chalked up to the start of his youth-league football season. But the sarcoma diagnosis was only the start of a story that goes beyond one 11-year-old Dallas boy dealing with a serious illness. As friends, family and teachers explain, Will is a popular kid for reasons that go beyond fad or clique.

So people wanted to do something visible to show their support. The stickers that the high school team is wearing are one example. So are T-shirts that belong to every sixth-grader and staff member at Merriman Park. The messages – "Will Power" on the school T-shirts, "Will to Win" on the stickers – reflect the love and support for Will and his family. "It would be really easy to get down and think of all the things that Will is missing," said his mom, Renee Long. "But we've looked for the little blessings."

The stickers were spun up by Keith Beasley, father of one of Will's best friends and the owner of a local design company. The boys were on the same football team in the Spring Valley Athletic Association when doctors discovered Will's cancer. Beasley initially came up with stickers for his boy's team. But in the days that followed, the demand kept him heading back to the printing company. Most teams in the league are wearing them. The football team at Forest Meadow Junior High asked if Beasley could print them in purple – that school's color.

"I told them I could do it in any color that they want," Beasley said. He's also designed a T-shirt with the "Will to Win" motto. And then the high school came calling. Several members of the varsity squad live near Will, and the team's coach, Scott Smith, had heard about the stickers. A week before last week's playoff game, the captains and the coach agreed they wanted to do something for Will.

Last Friday, the doctors cleared Will to attend a playoff game. He was an honorary co-captain and watched from the sideline as the Wildcats came from behind to beat North Garland, 49-28. "Winning that game was huge for us," Smith said. "But having Will there put it in perspective that there are things out there that are more important than what we're doing as a football team."

If all goes as planned, Will is scheduled for seven months of chemo, plus reconstructive surgery on the leg. He's matter-of-fact about his illness. He says he's learned a bit about hospital stays. "I thought it would be a little adventure," he said. He and his family say the support from the community has made a big difference, whether it's stickers worn by strangers or an offer of a meal from a longtime friend. "That is God's way of coming down on earth and putting his arms around us," Long said.

Regardless of whether Will can attend the next playoff game, Will is taking a longer view. Asked whether he thought having cancer would change him, Will did not hesitate. "Now that I've seen so many people who want to help me," he said, "I'm going to want to help others."

 

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