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Stories of Courage & Hope Abstracts by Tom Swartz and Bruce Shriver
In this issue:
Childhood cancer chemotherapy pioneer, Dr. Charlotte Tan, dies at 84 Actinomycin D was the first antitumor antibiotic isolated from culture. But it took a young Chinese physician for this natural product drug to positively impact the lives of children with cancer.
On April 1st, childhood cancer chemotherapy pioneer, Dr. Charlotte Tan, died of pneumonia at the age of 84. It was Dr. Tan’s 1959 paper that provided the first insights on the potential benefit of actinomycin D in Wilms' tumor and childhood leukemias and lymphomas. Known also as dactinomycin, the drug also went on to be used in the treatment of rhabdomyosarcoma.
Dr Tan's story is fascinating and inspiring. Charlotte Tan Hsu was born in Kiang-Si, China. She earned her medical degree at Xiangya Medical College in 1947 and interned at Nanjing's Central Hospital. When the Communists took over China, Dr. Tan left on a freighter for New York and first worked at St. Barnabas Hospital in Newark. Word of her work in childhood cancer in China had traveled to this country, and C. Everett Koop, then a pediatric surgeon at Children's Hospital in Philadelphia (and later US surgeon general), brought Dr. Tan there.
In 1952, she joined the staff of Memorial Sloan-Kettering Cancer Center in New York. Colleagues have said that Dr. Tan was one of the country's leading pediatric oncologists during her more than four decades at Memorial Sloan-Kettering, where she was vice chairman for developmental therapeutics from 1974 to 1996, when she retired. In particular, she was the first to explore the use of several cancer drugs in the treatment of childhood malignancies, said Dr. Richard O'Reilly, chairman of the department of pediatrics at Sloan-Kettering. O'Reilly said Dr. Tan's studies of such drugs as dactinomycin led to their introduction into multidrug regimens to treat children with leukemia and cancers of developing bone, muscle, and nerve cell.
Dr. O'Reilly said that Dr. Tan worked tirelessly, "to ensure that the most promising new drugs would be available to children with cancer early in their development and successfully treated hundreds of young patients who are now cured, healthy adults leading productive lives throughout the world." In addition to her tremendous dedication to pediatric oncology, Dr. Tan led a vibrant, enriching, and fulfilling life outside of the clinic and lab, according to her daughter, Alicia Hsu. Hsu recalled that their home was always filled with exchange students from China, church friends, and family. “Mother loved to cook elaborate Chinese meals of colorful and fragrant dishes." Dr. Tan also embraced Christianity feeling that she was on a mission from God to ease the suffering of children and their families who faced childhood cancer. "Mother was an inspiration for hundreds of people: hospital colleagues, medical students, church leaders, theological students, nieces, nephews, friends, and neighbors," Hsu said.
The individual doctors and researchers who bring about advancement in the treatment of cancer should never be forgotten. All should celebrate the life and achievements of Dr. Tan.
Path to recovery paved with kettlebells How do you recover from cancer treatment? How about kettlebells? That was the method used by Henri Engle. Diagnosed with synovial sarcoma in his throat, Engle underwent four rounds of chemotherapy, six weeks of high doses of radiation, and months of eating from a gastric feeding tube. It left only 135 pounds on his once 220 pound, 6-foot frame.
"It took cancer to get me in shape," said Engle. "It broke me down to nothing. And I built myself back up with kettlebells."
Engle’s cancer journey began Thanksgiving weekend in 2005. His throat swelled up, and he began coughing up blood. Fifteen minutes later, he was being wheeled into surgery to remove a mass obstructing his airway. He woke up about five hours later in the hospital's oncology ward, staring into his mother's ashen face. Engle, an Emerson College senior studying journalism at the time, said he cried once - the night doctors told him he had a 50-50 chance of surviving.
Deciding that self-pity served little purpose, he didn't cry again.
During treatment his esophagus atrophied and closed, which forced him to eat through a gastric feeding tube. And doctors believed he wouldn't be able to eat normally again. But Engle took this as a challenge. Eventually, to the amazement of doctors, he no longer needed the feeding tube.
His body, however, was extremely weak. So he went to work with the kettlebells.
So what is a kettlebell? A cast-iron kettlebell looks like cannon ball with a handle, and can weigh from 10 to 88 pounds. They originated in Russia, where kettlebell lifting became an official sport in the late 1940s. In about 2000, kettlebells made their way to the United States. Engle encountered them at a gym in Rhode Island, near the home of his parents. This unusual workout technique worked so well for him, the 24-year-old abandoned plans for a career in television production and opened his own gym in Newton Centre. For Engle, it's more than a workout. It's a personal calling. The only traditional equipment in the gym is a dumbbell rack and some punching bags. Otherwise, it's an open space outfitted with kettlebells of varying sizes and long sections of thick rope that are used in the exercise routines. Engle did obtain his journalism degree from Emerson, but he said that with the gym, "I get to help people doing something I enjoy - there's no better way to pay back the universe than that. Not everyone gets that kind of direction in life."
Engle's now cancer-free, and at 175 pounds, he says he's in the best shape of his life.
Teen returns to tennis court with prosthetic leg High School senior Ashley Hendrick will not be stopped. Nothing has stopped her yet. Not cancer. Not having her left leg amputated. Not playing with a prosthesis. About 16 months after losing a limb above the knee, Hendrick, who has been playing tennis since she could walk, is back on the courts for the Wildcats in an amazing testament to her faith and fortitude.
Diagnosed with osteosarcoma in her knee, she and her doctors decided on amputation.
"I always wanted to come back and play, but I did not know if I would be able to," said Ashley, 18. "Tennis does mean a lot to me. I had to learn how to walk again, I had to learn how to do it differently. I am just really happy that I have been able to get back into tennis and everything else I love to do.
Ashley’s determination is almost as important as her artificial limb in her comeback.
"This was Ash's decision," her father Jerry Hendrick said. "All winter long, she dragged me out to the club to hit balls. There is not a girl this spring who worked harder at tennis than Ashley. She worked non-stop at getting her stroke back."
Despite the pain and the dark days, Ashley is happy she went through the experience saying, "This all has just changed my perspective on life. It does not last forever, and things can change in an instant. I realize now that what is important is my faith, my family and my friends."
Watch Ashley in action on the YouTube video in the above link.
Sara Richardson of Albany, Ohio recently won three awards of excellence for participation in mock trial competition. But Sara has faced a trial of a much more personal nature. When Sara was 10, she was diagnosed with osteosarcoma in her right leg. She underwent years of treatment, surgeries and eventually amputation.
"I didn't like it (the prognosis) at all," Sara said. "I thought this was the worst thing that could ever happen to me, but I realized my life was a whole lot more important than my leg."
First undergoing limb salvage surgery, her cancer reappeared and a decision had to be made. I talked with God about it and he told me that my leg wasn't mine - that he let me use it for 14 years and it was time to give it back. I learned to surrender it back to him," she said. "Ever since then I've been cancer-free."
Sara drew strength from her friends, her family and her faith. At the same time, those closest to her were just as empowered by what they witnessed from her outlook.
"I got strength from Sara. She was thanking God for her one good leg and her two strong arms. It was remarkable," her mom said. "I wasn't feeling particularly spiritual and I didn't feel like jumping up and down for joy. But I watched Sara have this positive attitude, and I thought, 'shame on me. If she can have this attitude, so can I.'"
Sara's 10-year-old brother, Seth, describes his sister as "determined," her 12-year-old sister, Lydia, sees her as "amazing" and her 8-year-old sister, Leah, describes her as a "miracle." Six-year-old Rachel also sees her older sister as a marvel, because there hasn't been much she hasn't tried. "She jumps with me on the trampoline," Rachel said. "But I taught her how to flip."
Sara's intrepid spirit also led her to participate in a few adventures with some fellow amputees. The group went rock climbing as well as skiing - both of these activities were a first for Sara.
Another trial by fire that Sara volunteered for was her involvement in the Athens County home-schooled mock trial team. "I wanted to be the time-keeper, first so I could learn about it," Sara said. "But the coaches encouraged her to be a witness. They had confidence in her," her mother said. Sara won best witness at the district, regional and state levels.
"Sara played a local coffee shop owner who was an immigrant from Austria. She managed to pull off all of her testimony with an Austrian accent.
"She has faced some pretty tough circumstances. I think she demonstrates more than a sheer ability, she demonstrates determination, an excellent spirit to take on a challenge that is in front of her, and the ability to excel in meeting that challenge," her team advisor said.
Sara’s team was one of 22 teams that advanced to the state competition. They narrowly missed advancing to the final round.
"I was really nervous for the competition, but it wasn't a life-or-death issue," Sara said.
Determination Keeps Racer at High Level All Kurt Kossmann has ever wanted to do is race. Sailboats, skiing, cars - he said he's done it all. Yet, whether he's teaching a skiing lesson or hopping out of the cockpit of his Ford Mustang he's consistently striking awe into those around him. "And I'm not quite as fast as I used to be," Kossmann says with a smile. "Well, actually only when it comes to running."
Kossmann lost most of his left leg to osteosarcoma in 1988. Yet Kossmann continues to race with a specially, self-designed prosthetic he developed even before losing the leg.
Kossmann was an up-and-coming driver in the mid-1980s, and a frequent race winner in 1988. The following year he noticed a bump in his left leg. The diagnosis was not good; the cancer had spread throughout his leg, and too much for doctors to save it. His leg required an immediate mid-thigh amputation for a chance of survival.
Kossmann made his decision for the surgery and immediately asked himself how he was going to continue with his racing career. He began designing a prosthetic before the amputation so he could continue his racing career. "Racing was the only thing that kept me going; it's the only thing I've ever wanted to do," said Kossmann, "This was going to take it away from me potentially. I thought I could beat this, and that's when I started designing the leg."
It was thoughts of getting back in a race car that pushed him harder. And his toughness and determination returned in ways that most people could never even consider. While going through chemo, Kossmann stayed busy contacting prosthetic companies to help him develop the leg. He ended up meeting with a company in New Hampshire, owned by a couple of Corvette and Porsche buffs, to do the development. In addition, the team became one of the first sponsors Kossmann attracted upon his return to racing.
Less than a year after the amputation, and in between chemo sessions, he was back in a race car with his newly designed prosthetic. It was the first of many new rides for Kossmann, who said even though he was fast, he wasn't sure if people would give him the opportunity to drive due his condition. A small adapter attached to the clutch was the only modification he needed in that first ride and has needed thereafter. And he's been in it ever since.
Kossmann said he doesn't believe he's at all at a disadvantage when racing. He's at a slight weight advantage as his prosthetic - designed to be narrow and light weight - weighs in much less than his former leg. He works out nearly every day of the year, trying to stay in shape, and believes races are a workout in themselves due all the shifting.
As he's said many times, a good car can't win without good drivers. Even after all he's been through, he believes he's just another good, fast driver. "I'm at no disadvantage to any other driver out there," Kossmann continued. "I still look at it as a challenging thing to do, but that's kind of the way I tackle everything I do...I try to stay humble. I don't think I'm anything special."
Fund-raiser helps families battling diseases Evan Brady was a typical happy-go-lucky, lacrosse- and football-playing teenager. He captained the Philadelphia All-Star lacrosse team and was set to begin study at Malvern Prep. All seemed to be going well. But an injury forced him to get his nagging right knee checked out. A tumor was found on his right femur. A little more than four years later Evan died of osteogenic sarcoma. He was 19.
What happened during those four years - what Evan, the Brady family, and the Malvern Prep community experienced - inspired all those involved to keep Evan's spirit alive.
On April 20th, youth lacrosse teams from across Chester and Delaware Counties, Pennsylvania will square off on the Malvern Prep fields for the second running of “Evanfest.” The proceeds of Evanfest benefit local families with children who are battling life-threatening illnesses.
The event raised $46,000 last year, and Bill Brady, Evan's father and chairman of Evanfest, is hoping to net $70,000 this year.
"Obviously, it's all in tribute to our son. It keeps us going," Bill Brady said. "He was the type of kid who would be at practice no matter how sick he was. Evan never focused on himself, ever. He never complained," said Joann Quercetti, who along with the Bradys and a few others helps decide where Evanfest money goes each year.
"We're supporting what Evan was all about, and what Malvern is all about. Malvern is about teaching kids to give back, and that was Evan's philosophy, to give back and help people in need," she said.
Evan's diagnosis in 2001 came as a complete shock to his family. That's why they are trying to help families going through the same thing today. Their Web site, evanfest.com, includes a section about the families Evanfest has given grants to. Some of them are dealing with the loss of a child.
Sammy chosen as spokes-child for Hyundai's Hope on Wheels Sammy Heim, diagnosed with rhabdomyosarcoma at the age of 8, was recently chosen as a national spokes-child for Hyundai's Hope on Wheels charity program. The Hope on Wheels program was created by Hyundai dealers and Hyundai Motor America to help kids fight cancer. The message is mobile literally taking to the road in a Hyundai SUV serving as a tangible, traveling symbol of hope on a journey across the country with the mission of Helping Kids Fight Cancer and donating to pediatric cancer research institutions across the county. Since the inception of Hope on Wheels in 2004, the Hope on Wheels tour has visited more than 70 hospitals nationwide, and has contributed more than $8 million to research institutions across the country.
Sammy and her family will be flown to about 4 or 5 charity events this year and Sammy's story will be on their website. Because this is their 10th year, Hyundai is hoping to get coverage for this year's kick-off in USA Today and other major news outlets. In addition, there is a possibility that Sammy could be making an appearance on the Ellen and/or Oprah shows. The hope of Sammy and her family is that they bring awareness of childhood cancers to the public, and to Rhabdomyosarcoma in particular.
Girl fighting cancer helped by plane crash survivor Big Macs and Happy Meals are helping a Portland, Oregon family battle their daughter's cancer. Kiersa Jacobs was diagnosed with Ewing’s Sarcoma just before her third birthday. Recently her family received half of all proceeds from dinner sales between 5 p.m. and 7 p.m. at a local McDonald's. "It's very overwhelming. I didn't think it'd be this big at all," said Kiersa's mother, Jill Jacobs, in response to the large turnout.
Teachers and students from Rosemont Ridge Middle School worked with their local Sparrow Club, an organization dedicated to teaching students how to reach out to other kids in medical need, to organize the event.
They held the fundraiser at a franchise owned by Mindy Mayer, the sole survivor of a plane crash in Alaska last summer that claimed the lives of her husband, son, daughter-in-law and two grandchildren. The crash has inspired Mayer to cherish every day that life has to offer - and energized her desire to help others.
Mayer said she does not mind losing some of her daily sales. "No, it actually makes me feel good. What does money do for you anyway? I mean, you can't take it with you, and if anyone learned that it was me this summer," she said. Throughout the evening, Mayer talked about her 3-year-old granddaughter, Allison, who died after 51 days in the hospital following last year's plane crash. "They're the same age and look so much alike," she said, referring to the first time she met Kiersa earlier in the evening.
"To see this little girl actually brings a lot of memories of the last time I saw my granddaughter, and I'll have to be honest - it's hard. It's hard," Mayer said, with tears in her eyes. "And I'm just pulling for that little girl. I just hope she makes it. I'll be thinking positive thoughts for her."
Jacobs said her daughter still faces 14 rounds of chemotherapy, followed by possible radiation treatment and surgery.
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