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Stories of Courage & Hope Abstracts by Tom Swartz In this issue:
The Wall of Fame - A Sarcoma Survivor Project Read the 21 "Survivor" posters in the article by Tami Barnes in this issue of ESUN. In this article, she tells the story of a project that had a profound impact on the patients and departmental staff at M. D. Anderson Cancer Center.
Going Against The Status Quo For Cancer Treatment When doctors couldn't agree on a method of treatment for him, Jim Matthews decided to take matters into his own hands to fight off cancer that had invaded the right half of his body. Matthews, 46, was diagnosed with leiomyosarcoma in 1996 at the age of 36. Matthews, an avid runner and a person who kept a fairly healthy lifestyle all of his life, said that six months before he was diagnosed he had pain in his right shoulder. He initially avoided seeing a doctor by icing down the pain and believing that it would eventually go away, but when the ache didn't subside, he finally caved in and made an appointment. "I went to an orthopedic surgeon because I believed I had torn a rotator cuff," he said. The orthopedic surgeon checked Matthews out to no avail, but Matthews soon contracted a cough on top of the shoulder pain. For the cough, he went to his family's doctor. The family doctor ran some tests and within one day the doctor told Matthews that he had discovered a large shadow on the right side of his body.
Within a week, Matthews went to the Memorial Sloan-Kettering Cancer Center where doctors took a biopsy and later diagnosed him with malignant cancer. Within one week of being diagnosed, Matthews said doctors performed surgery by cutting his right side open from the back and removing a grapefruit-sized tumor, his right diaphragm, at least one-third of his right lung, 3 inches of his esophagus, and - because the cancer was so close to his heart - his pericardium, which is a covering on the heart. "The next week the doctor wanted me to go for radiation," Matthews said. "Chemotherapy was not suggested because according to statistics, radiation is the most successful at battling dormant cells."
Strong believers in health care might have felt compelled to thrust into the first medical evaluation, but Matthews said he prayed about not having to take the radiation because he had doubts. "In the words of the Gospels and [with] all my strong Catholic upbringing, I turned my life over to Him," Matthews said. When Matthews and his family questioned the doctor about the necessity of the radiation treatment and if it was the only option, a board of doctors at the hospital reviewed Matthews' case. "On this board of 10 to 12 doctors, in my case when radiation was suggested, one-half said yeah and the other half said nay," Matthews said. Due to the split vote, Matthews went out and sought various other opinions. He went to the Dana-Farber Cancer Institute in Boston, the Mayo Clinic in Rochester, N.Y., the University of Massachusetts and the University of Pennsylvania, and he got a couple of local opinions as well, he said. "Everyone had different answers," Matthews said.
Matthews read a book by Anne E. Frahm, who had breast cancer that spread into her shoulder. Frahm, a Christian, went against what doctors prescribed and fought off cancer with nutrition. Finding the idea intriguing, Matthews discussed with his wife, Laura, the possibility of warding off cancer by juicing, taking vitamins and becoming a vegetarian. Laura ultimately convinced him to go with his heart and try that method of treatment. "We all search out our understanding of beating cancer," he said. "Those who go traditional, as well as others that seek a road less traveled." Today, Matthews is a vegetarian who regularly juice-fasts for a couple of days at a time. He only eats food grown organically, and he's a big proponent of green, leafy vegetables, Coenzyme Q10, Ester-C, Vitamin D, calcium and Vitamin A. He also advocates getting regular checkups and complete blood counts. "As I started on my path to survival," he said, "I would guess how long it would take me to gain a certain amount of strength, and I wanted to get to five years." He continued, "As each year went by, people would see me and would say that it didn't look like I ever had cancer." Matthews would show those people the scars from his surgery.
As more years went by and Matthews grew even stronger during his recovery process, he decided that he wanted to reach out to other people who had been touched by cancer. "There are groups that people can rely on for support," he said. "One of the greatest feelings of strength from the human perspective is a sense of comradeship. Trying to reach out and help others - that is what I love." Along with finding strength in survivor organizations - and providing it as well to fellow survivors - Matthews has taken part in the local annual Relay for Life for the past six years. It is here where he shares in the emotions of those touched by cancer "who seek peace and solace to live each day to the best of their ability." "When people relate to each other about survival, a very powerful feeling comes over you that carries you into the next years," he said. Matthews, who will have been in remission for 11 years come August, said his condition is truly a mystery since he believes seeking good health played only a small part. "So many friends I have seen leave this earth since my years in support of those with my specific cancer," he said. "The real factor I have gained is growing in my faith stronger." Through his experience with cancer, Matthews said he has learned that the real fortune of life is family and peace in survival. "Having a second chance," he said. "What a blessing."
Pain free at last. That's how Sharon Babineau described her daughter Maddie's lost battle to cancer, after a three-year fight. Maddison Babineau, 15 years old and Ontario's Junior Citizen of the Year 2006, died at 4:50 p.m., Tuesday, May 15. Maddie became well known during the last three years for her generous heart and bravery. While battling Ewing’s Sarcoma, she began doing fundraising for the children in Africa, whose poverty touched her. Through the Make a Wish Foundation, Maddie chose to have a school built in Kenya, and later sold jewelry from her hospital room at McMaster Sick Kids, to build a well for the school. This was the beginning of MAD, an acronym for making a difference and the first three letters of her name. MAD took on more projects and the $6,000 for the well was just the beginning. Today, 45 boys and girls are going to school in Enelerai, a Kipsigis community in the Maasai Mara, because of her generosity.
Together with a team of friends and family, she participated in the 2005 Canadian Cancer Society's annual Relay for Life, the all-night walk. Sharon said Maddie's gift of love and selflessness has touched so many and wants the community to honor her memory by continuing Maddie's work in Africa. Maddie was no stranger to pain and suffering. Her father, Stephen died of ALS when she was just six years old. During this struggle, she helped her mom and dad out as well as caring for her younger brother Derek. "Our sweet Maddie has earned her wings to Heaven, into the waiting arms of her daddy, Stephen Babineau," added Sharon. Maddie's cancer had returned for a third time in February. During the prior three years, she had endured ongoing pain, following multiple rounds of chemotherapy, a stem cell transplant, surgeries, and a prosthetic shoulder surgery. In February, she began a new chemotherapy drug, still hoping to beat it. Months into the treatment she was transferred to Toronto's Sick Kids. Nevertheless, she developed an infection in her lungs. And her family shared the dreaded news that tests indicated cancer had been found in Maddie's head and hips. Her frail body, ravaged by chemotherapy, began to succumb to the illness, and her organs began to fail. She was in the ICU and then on life-support before passing away. During her brave battle, the family was able to enjoy some amazing trips that Sharon and Derek will cherish for a lifetime, including visits to Walt Disney World and the West Edmonton Mall. Maddie had been a Grade 10 student at St. Thomas More Secondary School, where staff and students raised money through Moustaches for Maddie in March. Maddie's work will not end with her passing. Sharon hopes to continue fundraising for Africa.
Carlisle, Texas Indian pitcher Quinlan Wedel steps onto the mound and drags his foot through the red dirt. With the tip of his toe, he makes a number five in the ground. Quinlan's carving is a tribute to the teammate missing from right field. Only, it is not just his teammate, it is his brother Coleton. "My brother is going through a disease called Ewing's Sarcoma," Quinlan explains. "It's very rare, about 200 cases a year, everywhere." More people have a chance of winning the lottery than developing the disease Coleton is fighting. The survival rate for victims is just 20 percent.
"It was very bad news when we heard it," Quinlan said. "Everybody broke down." While one brother is fighting for his life in a Dallas hospital, Quinlan's brothers on the field have rallied behind both teammates. The Indian's motto is "Do It For 'Skinny,'" Coleton's nickname. "Our coach in one game said come on 'Skinny' and from there it just grew," Quinlan said. What has also grown is community support. Word of Coleton's illness sparked the small town to make a big move. "Do It for 'Skinny' " T-shirts are on sale and more than $5,000 has been raised for the Wedel family.
"It's Carlisle," said school counselor Leasha Smith. "It's a small community, with a lot of people who care about each other. You know you have to reach out. It is the support and the prayers from hundreds of strangers that have the Wedels now believing in miracles. A recent test showed Coleton's cancer was in his skull, arm, shoulder and leg. But a more recent scan of those same areas came up clear. Coleton's cancer is now confined to a treatable tumor near his spine. His survival chances thus rose from 20 percent to 70. "For once my parents were crying tears of joy instead of sad tears," Quinlan said. "I just thank God first. I thank (East Texas) for your prayers. You've helped us a lot."
Coleton had surgery and will continue chemotherapy for nine months. He will not be on the field for the rest of the Indians season, but he will still be with the team. "We have a spot for him in the dugout. We leave a spot for him, put his jersey on a chair and he's there with us every night".
Players Spend Time With Cancer Sufferer Allison Carilli knew how devastating Thomas Jackson's situation was almost the instant she met the 21-year-old former football player. It wasn't so much his frail and emaciated body. It was his eyes - those sad, sunken eyes. They revealed a spirit on the verge of breaking. It was a look she'd seen before. "He was in for chemotherapy, and you could tell on his face he didn't want to do it any more," said Carilli, a third-year medical student at Shands at the University of Florida who lost both parents to cancer. "It had taken such a toll on him. He didn't think it was working any more. You could tell he was close to giving up."
Carilli, 24, had just been assigned Jackson on the oncology floor at Shands. The more she got to know the personable Jackson - once a strapping linebacker for St. Joseph's Academy in St. Augustine and later at Tusculum College in Tennessee - the more she wanted to help, to find a way to re-energize his spirit, to return some joy to his life. She shared her feelings with her husband, Jason, and other members of the medical staff. This triggered a chain of events that would eventually draw Urban and Shelley Meyer and the rest of the University of Florida football family into the cause and bring all kinds of love and support to Jackson's bedside - and beyond. "These people were just so genuine with my son, so very loving of him," said Barbara Jackson, Jackson's mother. "They made him feel comfortable. They made him feel special. There were times he even forgot he had cancer."
Unfortunately, there is no miracle ending, in the conventional sense, to the Thomas Jackson story, because there was no cure for the clear-cell sarcoma that ravaged him. But, in so many ways, a miracle did occur, not just because of the many people he touched, and was touched by, but because his story now will live on. Jason Carilli is doing all he can to make it happen. He became so inspired by Jackson - and what happened in the final months of his young life - that he and Allison recently co-founded Dreams of a Lifetime for Cancer Patients: "Changing Lives One Dream at a Time," a nonprofit foundation with a goal to provide encouragement and support by granting dreams for terminal cancer patients 18 years and older. It's sort of the Make-A-Wish Foundation for adult cancer patients. The foundation's first dream story belongs to Thomas Jackson. Jason Carilli vows there will be many more - not just from Gainesville, not just for former athletes, but for cancer patients from across the nation - as the foundation grows.
"It's like T.J. lives on," said Carilli, 28, who graduated from UF with a degree in finance in 2005 and has made the foundation his life's work. T.J. (as his friends and family called him) was diagnosed with cancer on Dec. 19, 2005. Home in St. Augustine for Christmas break after his sophomore season at Tusculum, a Division II school in Greeneville, Tenn., he noticed a small lump on his back. Doctors thought it was a cyst, but a biopsy revealed it to be clear-cell sarcoma, a rare and aggressive form of cancer. By the time Allison Carilli was assigned to Jackson 11 months later, he looked like a different person. He'd lost almost 100 pounds (down to 134), his eyelashes had fallen out and his will to continue the fight was fading. Allison told Jason Carilli they needed to do something. They thought sending Jackson to a UF football game would be good therapy. The problem was getting tickets. A doctor at Shands gave his OK for a game, but Jackson was too sick to go that day. That's when Jason started working the phones and eventually secured tickets from a booster for the Nov. 18 Western Carolina game. Jackson and his father watched the first half from the Champion's Club. "After the game, he was joking with his family about losing his eyelashes and joking about eating ice cream," Jason said. "I said, 'Wow, that's an amazing turnaround. We're going to have to do some more.'" Later Jackson was given season tickets for the 2007 season. "He was so overwhelmed he started crying," Shelley Meyer said.
Jason Carilli was so overwhelmed by the revitalizing effect all this was having on Jackson that he came up with the idea for the foundation. He told Jackson about it, and Jackson said he would do everything he could to support it. The day after the national championship celebration, Meyer, quarterback Tim Tebow and freshman tight end Aaron Hernandez visited Jackson in the hospital, bringing him national championship shirts, jackets and hats. Tebow promised he'd take Jackson to some upcoming UF basketball games. Meyer told Jackson to keep up the fight and never give up. "It was the neatest thing I've ever seen in my life," Jason Carilli said. "It was a touching experience because you knew how much it meant to T.J. just by the look on his face."
"One of his doctors caught me outside the room, and she was crying," Shelley Meyer said. "That's when I realized how sick he really was. It still didn't register that he was leaving us." Shelley spent about 30 minutes with Jackson, who held on to the stuffed Gator the whole time. "She was whispering things in his ear about recruiting and what was going on with the team, and he was smiling," Barbara Jackson said. "He was very alert, very happy." Less than 30 minutes after Shelley left the room, Jackson died with his family by his side. His mother said he was still clutching the stuffed Gator when he passed away.
A few days later, Urban and Shelley Meyer went to St. Augustine to say goodbye to Jackson at a memorial service. Lying next to Jackson in the coffin was the stuffed Gator that Shelley had given him a few days earlier. Jackson was taking with him a part of those who touched him in his final days. He left behind a great deal more for those he touched. "He was inspiring to everybody," Tebow said. "He did much more for us than we did for him." Now, through Dreams of a Lifetime, Thomas Jackson's story is only just beginning. "He's going to touch the lives of many more who are struggling with cancer," Carilli said. "He's going to guide me and help me make the right decisions and bring in the patients who need the most help. He inspired this."
Rose Burt: Leadership in Courage Award The following quotation is taken from the program that was given to all those who attended the Fifth Anniversary Celebration of the Sarcoma Foundation of America Gala on May 21, 2007 at the New York Marriott Marquis Hotel.
We are proud and appreciative that, among other things, Rose is a member of ESUN's Sarcoma Advocacy Advisory Committee.
One Year Later, Cohen Still Spreads Hope The Norwalk High School softball field was filled on a recent Sunday afternoon with nearly 200 people who may not have known one another, but were joined by the common link of knowing Chelsea Cohen. The 2006 graduate of Norwalk High was an inspiration to many as she valiantly battled central nervous system sarcoma for two and a half years before she died at her home on Aug. 2, 2006. Though some may have said she lost her battle to the disease, those close to Cohen said she rose to the challenge. On that Sunday afternoon, almost one year after her death, her memory and spirit were more alive than ever as Chelsea Cohen Memorial Softball Day was celebrated.
The idea, as well as a memorial fund in Cohen's name, was created by Cohen's mother, Barbara Rittner, and her friends as they gathered around the kitchen table brainstorming ideas of how to best honor Cohen's memory, Rittner said. Forty-eight hours later, Rittner received word that the softball fields at Norwalk High and Naramake Elementary schools were available on June 3 for a day of games, thanks to willing supporter Terry Aloise of NAA Girls Softball, and the rest was history. "Sometimes it's hard to think that all things happen for a reason," Aloise said Sunday, recalling a Bible passage he had read earlier in the day that reminded him of Cohen. "It basically said affliction produces endurance and endurance produces hope, and if there is anybody who is the picture of endurance, it was Chelsea. She produced hope, which is what today is all about." The turnout was greater than Rittner or Aloise expected as six-plus teams were created with over 150 participants, including high school students, Cohen's former teammates, returning alumni and surrounding community members. Cohen loved relationships "and sucked you right in," Rittner said, which is why the mother felt it was so amazing that so many people attended the event, many who barely even knew Cohen at all.
The participation fee for those who came to play softball Sunday kicked off the start of the Chelsea Cohen Fund, which was formed with the goal of providing scholarships to student-athletes in order to help them to reach their full potential. In the future, the scholarships will be awarded to a student-athlete with financial needs and used for anything from training programs to equipment, team fees to scholar-athlete awards or even some day to a field in Cohen's name. Designated portions of the money also will be donated to cancer research "to help eliminate this disease which affects all of us," Rittner said.
Cohen was an avid athlete. Although soccer was her primary sport, she loved to run track and play basketball for the high school. In her spare time, she played travel softball with Norwalk. "Chelsea was always such a team player and she rejoiced in everyone else's success and accomplishments," Rittner stated. "She defined positive example and was a definition of hope." It's under the umbrella of that word that Rittner will carry on Cohen's memory, breaking it down into an acronym for Helping Open Possibilities for Excellence. "Chelsea was always so genuinely excited about everything, whether it was good or bad," one of Cohen’s oldest friends Joslyn Kenowitz said, "and this is just a way to celebrate a life of one of our friends and to honor her and keep her memory alive."
Cohen's courage and her spirit are part of the legacy she left behind and part of the memory that everyone came to celebrate on Sunday. "Whether we have played softball or soccer with Chelsea, been in a class with her or just have met her, she has left an amazing and wonderful impression on us all," Kenowitz said. "She has inspired us with her talent and her excitement and has made us roll over with laughter, but as we know, that is just who Chelsea was." Kenowitz added that she has missed Cohen greatly this past year, but she has brought a memory of her friend wherever she has gone, and knows that others have as well. She and other friends of Cohen's, all back from their first year at college, came together Sunday to form a team to play in the first annual softball day. With hand-painted shirts decorated with a baby blue ribbon, Cohen's favorite color, the word "Hope" and Cohen's No. 17, Kenowitz stated, "I am honored to play for her today and I am so thankful for everyone's eagerness and help to participate in the tournament. Let's keep the hope alive and play ball for her."
"Chelsea inspired by example and led us all by example and we are all better people for knowing her," Rittner remembered. "We hope that today will be the start of our lasting tribute to Chelsea. I feel her with me always and I know how much she would have loved this day." By the laughter in the air as the teams stepped onto the field to play, it was a true tribute to just how much those who gathered loved Cohen as well.
Teachers, Cops Going To Bat For Brave, Smiling Shantall Not every 19-year-old young woman has a softball game played in her honor on her birthday weekend. Then again, not every 19-year-old girl has gone through as much as Shantall Shimogayto. In fall of 2005, Shimogayto was diagnosed with osteogenic sarcoma. Since then, the cancer has forced the amputation of her right leg. Her mother has stopped working to care for her full time, her father has taken an extra job, and the medical bills continue to rise. But people in North Bergen, NJ have come to Shimogayto's aid. Her high school teachers brought assignments to her hospital bed and even taught her by phone when she couldn't come to class. High school faculty, North Bergen businesses and others have donated $6,400 so far to help cover Shimogayto's medical expenses. And on June 3rd, the faculty of North Bergen High School will have taken on the North Bergen Police Department in a softball game to help raise money for Shimogayto and her family. "She's a happy-go-lucky person, and a very strong girl," said Police Detective Henry Marrero, who works in the school. "It's been an inspiration for me to see how happy she is." At a news conference to announce the softball game, Shimogayto was all smiles. She wore vibrant, horizontal-striped pink-and-white socks - one on her foot, and the other over the end of her amputated leg. She was full of thanks for everyone who is helping her. "I feel great that they're doing this for me," said Shimogayto, who recently turned 19. "God bless them."
Hundreds Log On To Teen's Blog As He Battles Cancer "Dying is not what scares me, it's dying and having had no impact. I know a lot of eyes are watching me suffer and -- win or lose -- this is my time for impact." -- Miles Levin. Miles Levin is a presence, even when he is elsewhere. He has won admiration, and even adoration, from readers of his online journal who have followed the journey of an eloquent and candid teenager who has used the technology of a computer keyboard to forge improbable and far-flung connections, from Detroit to Tokyo. Miles lies weakly in a bed succumbing to the rampaging cells in his 18-year-old body as an outpatient at Memorial Sloan-Kettering Cancer Center in New York City. His voice is soft and, at times, barely audible. Yet even as his strength diminishes, his stature grows. Since his diagnosis 22 months ago with rhabdomyosarcoma that has advanced into his bones, Levin has documented cancer's assault on his body with a clarity of voice and purpose that astonishes a growing cult of readers at his blog.
“Were it not for one little risk -- death -- cancer was the greatest thing that has ever happened to me. I can bring something different to the table and am determined to do so." – College application essay. On campus, students check in to his CarePage during classroom breaks and exchange Levin updates over lunch. "For some students, he's like this seer, the Daily Guru they have to read," says his sister, Nina, 16. With no real publicity, the site's audience has spread to almost 1,000 people who, among them, sent 20,000 comments to the Miles Levin home page. Early on, Levin decided that he wouldn't allow the disease to conquer his spirit. "I decided I'm not going to let it bring me down. I said, 'I'm sorry, cancer, " but this is the way it's going to be.' Instead of becoming isolated, he has reached out to others by reporting with precision and dignity on his treatment, his disease and his emotions. "It's generous, what he's done," says Ruth Rattner, a Birmingham art consultant who knows Levin only slightly but reads every word he writes. "He has changed lives, literally changed them, including mine. I have learned so much from him." No one who knew Levin four years ago expected him to evolve as he has, from teen to teacher. A former English teacher, John Hazard, wonders which will be the greater loss to the world: "That of this remarkable person or (the loss of his) potential as a writer?"
"Someone wanted to know if there was anything I wanted to do before I die. There are a million things ... it is just not possible to finish an all-you-can-eat appetizer platter ... there is nothing I need to do before I can die peacefully. I've already checked those things off." To Levin, the big questions -- What is the meaning of life? Does God exist? Is terminal cancer a reasonable price to pay for wisdom? -- are not abstractions. They're as real as the blood transfusions he requires every several days, or the backpack holding a chemotherapy drip that was lodged on the floor beside him last week. While his classmates look forward to commencement exercises in June as the beginning of their adult lives, he's losing hope of living to that day. Even he marvels at his journey from "the boy who was five minutes late to class," to this astonishingly mature young man, "an old soul," as Dr. Charles A. Main, Beaumont Hospital's chief of pediatric oncology, describes his patient. Levin matters to his classmates because he's drilled down and focused the moments on what matters since his diagnosis. He is a real-life example of ideas that otherwise come alive only on movie screens for most of his teenage peers. Words like courage, bravery, and hero. He's tried never to be preachy about his hard-won philosophy. "Not once have I said, 'Live each day to the fullest,' he points out, "because it's a terrible cliché." Yet despite nausea and exhaustion, despite the ravages of his disease and its treatment, he has done just that. Bravery is enduring physical hardships with resolve. Courage is showing up for a 1:15 p.m. class, two hours after a chemotherapy treatment that leaves you retching and weak. Love is patiently teaching hard-won lessons about life or, simple ones.
"Fairy tales love a happy ending ... I'll try to explain why this is the best thing that could happen to me. Trials make or break a person. So while I have been given a terrible curse, I have also been given a rare opportunity, an ugly blessing. While it has been challenging, I've had friends, family and resources to help me through it." His ninth-grade English teacher, Karen Hand, remembers Levin as "a typical 15-year-old boy." He was sweet, sensitive and charming. Where, though, was his book bag? Or the essay due that morning? On a sunny day in early June, he was stricken by abdominal pain as he mowed the lawn, pain so severe he had to stop mowing and find his mother. At the hospital emergency room, he impatiently awaited release. Then he overheard a technician talking on the other side of the curtain. He heard his CAT scan mentioned casually and, then, unmistakably, "It looks like lymphoma." He knew that word, knew what it meant, and was equally certain that it couldn't possibly refer to him. "I thought, 'You've got the wrong guy. I'm 16, I've got a movie to see in twohours, I don't have lymphoma". Hesitantly, at first, Levin began to keep a journal of his through-the-looking-glass life on CarePages -- an online journal accessible to friends and family. "It started out as a way to convey information. I could do one update and not get 45 calls," Levin says, "It was very intimate at first." But over time, he realized he wanted to write for more people, and put more time and care into each entry.
"I was thinking how you start out with a bucket full of golf balls and you just start hitting away carelessly. You have dozens of them, and each individual ball means nothing so you just hit, hit, hit. One ball gone is practically inconsequential from your practically bottomless bucket. Yet eventually you have to reach down towards the bottom of the bucket to scavenge for another shot and you realize that tries are running out. Now with just a handful left, each swing becomes more meaningful." --July 7, 2005. The treatment course for this cancer is 18 months of surgery, radiation, and on-again, off-again chemotherapy, treatments that wracked his body even while he located humor amid terror. Early on, he regaled his new band of readers with details of the instructional video, "Radiation and Your Pelvis," offered before radiation treatment. Some days, he wrote about whether life has meaning or the sense of dread he felt approaching the hospital; on others, he might describe the sheer, sensual pleasure of eating a pizza after days of feeling too nauseated to eat. At school, his teachers were amazed at his improvement as a student. Once unfocused, he used his good moments to do homework or attend classes, making his newfound excellence look effortless. In the CarePages, he stayed optimistic, especially after the cancer went into remission in July 2006.
"I mowed the lawn (sounds measly but ask anybody who has been on chemo and it's not). Later in the week, I even took an 18 mile bike ride. I turn 18 tomorrow. Unthinkable. But there you have it Not only is this milestone meaningful in the standard-issue, our-little-Miles-is-growing-up-so-fast way but I could be dead by now. Easily I have no evidence of disease." -- Aug. 10, 2006. Last December, chemotherapy treatments ended. Levin was "clear" -- as clear as a patient with "rhabdo" could be. There was a chance -- not a good one -- that the disease was vanquished, and Levin diligently reminded his readers of the dismal 20 percent survival rate. Even so, he was optimistic and musing, as always: "I am living more richly than I ever was before cancer, so if I die, will it have been worth it just to get these years of superliving?" That month, he took the ACTs. After applying to two elite colleges, he was accepted to both: Oberlin in Ohio, and Kalamazoo College. Alive with hope, he reminded readers that the greatest risk for relapse lay in the period after treatment ends, when undetectable chemo-resistant cells rebound, stronger and more rapacious than ever.
"We got the scans results back yesterday and they are not quite what we were hoping for. There's no easy way to say this, but my cancer is back." -- March 13, 2007. It is not known how many days Levin has to live. He said he had strived for saintliness, because he had seen how much his own courage inspired and affected others. Many children diagnosed with cancer die lonely deaths, abandoned by their peers, or isolating themselves. But Levin has reached for -- and seized -- the hearts of those around him. One of Levin's ad hoc theories identifies two kinds of tragedy. The first type is sad and empty. "In the second type, something beautiful can come out of that tragedy," he says, speaking of his own life. "I think that's what happened here." For almost two years, Levin has fought to find the beauty in tragedy, and to do so without gloss, without sacrificing truth. What's the point of so much suffering and striving? In the end he finds himself not alone, he says, but enveloped in love.
Community Supports Boy, Family Alex Franke, 9, has always been a popular fellow. Now he and his family are thankful for the gifts of friendship and compassion from strangers as well as friends and family. The outpouring of kindness began after what was thought to be growing pains in Franke’s leg. They turned out to be nerve compression due to a cancerous tumor on his spine. Diagnosed with Ewing’s sarcoma in December, Franke and his family had a rough road ahead. Though the experience is far from over, there is hope. The Champions after-school program, housed at Fair Park Elementary School, started the ball rolling to help Franke and his family. With senior site director Pam Steber and assistant site director Dottie Degnitz at the helm, student members decided Franke would benefit from a fundraiser to defray the cost of his treatment. Students sold 1,078 units of refrigerated cookie dough, netting a gross profit of $5,357.80, which will be presented to the Franke family.
Michael Lewandowski would have turned 38 had he not died last October after an 18-month battle with sarcoma. But his children, 16-year-old Alicia and 14-year-old Brandon have found the ideal way to honor their father's memory and love of physical fitness while helping to make sure others don't suffer a similar fate. Proceeds, which have reached $10,000, from the Kids Kickin' Cancer 5-kilometer run will benefit research programs at Christiana Care's Helen F. Graham Cancer Center.
"My dad really liked physical fitness himself and he always taught us to be healthy," said Alicia. "Back in October, when we were sitting outside after the funeral, my uncle had the idea of having a golf outing. But we figured that wouldn't really attract kids, and my dad really loved kids." In February, Alicia told her mother, Renee, she wanted to hold a running event, and the planning began. The idea was warmly received by St. John the Beloved, where the Lewandowskis attend church. Then, it was a matter of spreading the word and enlisting the aid of friends to help with race amenities, such as T-shirts (designed by Brandon). It was a much bigger undertaking than Alicia imagined. But she and her brother and other organizers found a receptive audience throughout the community, especially among classmates, parishioners, teachers, school administrators, friends and teammates, such as those on Brandon's Hockessin Soccer Club Cyclones under-14 representative team, as well as some of the Cyclones' soccer rivals. "A lot of people are doing it," Brandon said. And he knows why. "They don't want to see people dying from cancer anymore," Brandon said.
Michael Lewandowski was the manager of nutrition services for a school district, a job that put him in regular contact with children, whom he cherished. Lewandowski played and coached soccer and also was an avid runner. In March 2005, he discovered a lump in his neck and shoulder area that was later diagnosed as a sarcoma. The four family members enjoyed one last summer together in 2006, with Michael aware of his fate but determined to leave his wife and children with a positive outlook. He apparently succeeded. "He was so positive and fought so hard," Renee Lewandowski said. "We always lived life to the fullest. He gave us a sense of peace."
It remains. The race will have drawn at least 350 runners. And what would Michael Lewandowski think of all this? "He would be amazed," Alicia said. Chances are, he'd also be very proud of his children. "What they learned through him was that physical fitness is so important," Renee Lewandowski said. "We had him for those 18 months because he was so fit. Let's see if we can benefit some other people."
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