Chris Arnold and Ellen Yeomans thought a bone marrow transplant would cure their daughter’s leukemia.
Paige Yeomans Arnold was diagnosed with chronic myelogenous leukemia (CML) in June of 1993. The cancer is typically found in adults, not children, who are more likely to get acute myelogenous lymphoma (AML) or acute lymphocytic lymphoma (ALL). At first, she was treated with an experimental drug called Interferon, which put her into a brief remission. But a few months later, the cancer returned, leaving the family with just one choice: a bone marrow transplant.
“We had no match in our family — our other daughter, Alex, was not a match,” Chris Arnold said. “There’s only a 25 percent chance of matching a sibling. There was only one unrelated donor in the national database. Thankfully, she said yes, she’ll donate.”
At first, it looked like the transplant had been successful. But then Paige, 8, took a turn for the worse.
“It was supposed to be a perfect match, but her new immune system didn’t see her body as home, so it attacked her,” Arnold said. “She developed a severe case of graft vs. host disease. That’s what killed her. The only cure we could give her killed her.”
Paige died in August of 1994 before starting third grade at Palmer Elementary in Baldwinsville.
Sadly, Paige is just one of thousands of children to lose the battle with cancer. Worldwide, 250 kids die every day from cancer. One in 330 children will be diagnosed with some form of cancer by the time they’re 20 years old, meaning the incidence is greater in children and adolescents than any other age group except for those over 65. It’s the leading cause of death by disease in children under 15 in the United States.
According to the website for St. Baldrick’s, which raises money for children’s cancer research, more adults than kids get cancer, but the average age of diagnosis for a child is 6. For an adult, it’s 67. That means that kids lose an average of 71 years of life to cancer, while adults lose an average of 15.
But research for all kinds of childhood cancers only gets about 4 percent of the federal funding allocated to cancer research. Pharmaceutical companies provide about 60 percent of the funding for drug development in adult cancers, but almost none for childhood cancers. Why? There’s no profit in it.
“Pediatric oncology is not a sexy, hot growth area for research for therapies,” Arnold said. “Any child sick with cancer is too many, but in terms of where pharmaceutical companies are looking for places to invest in to get a return, the volume isn’t there. It’s in breast cancer and other kinds of cancers. Other cancers are more prevalent, so that’s where the return is. Pediatric oncology doesn’t get that attention. So there’s continuously a need for pediatric oncology research towards a cure.”
Running for a cure
The Yeomans-Arnold family has made it their mission to make sure other families don’t have to go through what they did. In 1997, in conjunction with Palmer Elementary, they started a walk/run in Paige’s honor.
“A couple of the teachers and the principal of the school approached us and asked if it would be okay if they did something to memorialize her,” Arnold said. “We were more than happy to say yes. One of the teachers was a runner, so they said they’d just do a walk.”
The first walk, which took just a few weeks to pull together, brought together 225 people who raised about $2,200. Arnold said the family donated it to Paige’s oncologist at Upstate Medical University and asked that it be used in her memory.
From there, the event continued to grow. Paige’s Butterfly Run, so named for the girl’s love of butterflies, continued at Palmer until 2007, when the nonprofit the Yeomans-Arnold family had started to support the run was offered a chance to move to a new location.
“We weren’t looking to make a move, but we got a call from Pam Levine, who runs the Taste of Syracuse. They were looking to have a run in conjunction with the Taste, and it was the same weekend we usually do it, the first Saturday in June,” Arnold said. “We talked and she offered to have us down there. It was a difficult decision. Palmer had been lovely. The teachers had gotten things started, but we were outgrowing it with the size of the event. So we ended up moving to the center of the city with the Taste. We figured it couldn’t do anything but help grow the event.”
The 2012 event raised more than $250,000 with more than 2,600 participants. Now Paige’s Butterfly Run, which is a Children’s Miracle Network-affiliated event, includes not only a 5K race, but also a 3K fun run/walk and a “Caterpillar Crawl” for kids 5 and under. And all of the money raised funds pediatric cancer research and programs for families.
Paige’s Butterfly Run proceeds are divided into four funds: Paige’s Family Assistance Fund, which helps families under financial strain while their child is being treated, as well as providing support materials to families; the Family Fun Fund, which goes to the Child Life Specialists at Upstate Golisano Children’s Hospital to provide fun activities for young patients; the Research Fund, which allocates money to the research of Dr. Bill Kerr at Upstate; and the Endowment Fund, which invests money to ensure that these programs can continue after the run is no more.
Arnold said Paige’s Butterfly Run will continue to fund cancer research until a cure is found.
“There continues to be a need,” he said. “Therapies have gotten better. For CML, Gleevec came out five years after Paige died. Had it come out when she was here, she might still be with us. In Paige’s case, it was the cure that killed her, so we’re especially sensitive to the need for more cures or more insights into what can cure cancer.”
For that reason, as well as more personal ones, Arnold said he wants to see the run continue to grow.
“For a purely personal reason, it’s a wonderful thing to see Paige’s image up there at the events, [to have] people that never knew her but have her name on their lips, to have her remembered,” he said. “Also, there’s that continued need. If we can raise more money to help today’s patients, tomorrow’s patients, through research or patient programs, because we understand what it’s like to be in that position as a family. To be able to help those that went through what we went through is powerful therapy for us.”
For more information on Paige’s Butterfly Run, visit pbrun.org.
A close shave
If you’re not a runner, there are plenty of other ways to help raise money for pediatric cancer research. Each year, Kitty Hoynes in Syracuse hosts one of the largest St. Baldrick’s events in the country, inviting participants to shave their heads in support of kids with cancer while fundraising for research. Why shave your head? It’s an act of solidarity for cancer patients, who often lose their hair to chemotherapy.
St. Baldrick’s is the largest private funder of childhood cancer research grants. They use a grant review system that ranks research grant proposals, only funding the most promising. The foundation was started in 1999 when three Irish-American business executives in New York City challenged each other to shave their heads for donations that will be filtered on to cancer research. It grew from a single event into a nationwide effort and became a nonprofit in 2005. The name is a combination of “bald” and “Patrick,” which denotes the fact that events are held nationwide on or around St. Patrick’s Day.
This year, a total of 56,841 shavees, both male and female, raised more than $31 million. Among them was Kevin Pierce of Camillus, who participated in his first St. Baldrick’s event this year in honor of a high school friend’s son. Mike and Liz White’s son Oliver (Ollie), then 2, was diagnosed with ALL in 2011. Ollie is being treated at Fletcher-Allen in Burlington, Vt., where he receives weekly infusions and will continue to receive treatment for several years. Pierce, who is friends with the Hoyne family, knew about their St. Baldrick’s event and decided to contribute his hair to the cause.
“Kitty Hoynes has a huge event — I believe it’s the second-highest grossing in the world — the Hoynes family are friends of mine and I wanted to support something,” Pierce said. “Honestly, I figured that my Facebook page gets enough traffic that I could raise a substantial amount of money. I think I raised around $1,200 in Ollie’s name.”
Pierce used his Facebook page to call for small donations of $5 or $10.
“I figured with more than 1,000 friends, if a low percentage averaged $10 or so, then I could raise a lot knowing that there would be a certain few donors who would donate significant amounts either to support me, the cause in general or specifically Ollie,” he said. As I got closer to the goal, I did the math to set a daily quota. People really like to help people reach goals if they are attainable, I think. Asking for a $40 daily total isn’t much to ask from the masses. Lots of people were inspired to single handedly donate enough to exceed the daily goal in one donation.”
Though he said it was awkward “cyber-panhandling,” Pierce said he never doubted what he was doing.
“I felt really good about doing it,” he said. “I certainly felt like a pest on Facebook asking for money every day, but cancer is so prevalent that one would be hard-pressed to not find a personal connection to the cause that might compel them to give a couple bucks.”
Pierce said the event itself makes it worth it for anyone considering participating in a St. Baldrick’s event.
“When you listen to the stories of the parents who have lost children or are struggling with pediatric cancer at the events themselves, it changes the whole thing,” he said. “To start raising money for pediatric cancer treatment in general and then be genuinely touched by what it means in people’s lives. We’re talking about a standing room only sardine can of people all tears eyed and completely silent.”
In addition, Pierce has a 3-year-old son, Caleb, so the event struck especially close to home.
“This could happen to anyone,” Pierce said. “I took Caleb to the event with me and I think it was special even for him at such a young age to see what the whole thing was like.”
For more information or to donate, visit stbaldricks.org.
When life hands you lemons….
You don’t have to shave your head to support pediatric cancer research. It can be as simple as hosting a lemonade stand, like 9-year-old Madison King, 9-year-old Owen Greco and 7-year-old Nadia Greco did earlier this summer. The King-Greco stand is just one of hundreds, if not thousands, hosted by kids nationwide to raise money for Alex’s Lemonade Stand, a charity that funds pediatric cancer research.
Lisa King, Madison’s mother, said the children, who are neighbors, host the stand every year because they recognize the importance of the charity.
“They feel that raising money in support of pediatric cancer research is such an important cause,” she said. “It relates to children in their own age bracket.”
“They want to make sure pediatric cancer research is at the front of people’s minds,” said Lisa King.
Alex’s Lemonade Stand was started in 2004 in honor of Alexandra “Alex” Scott. Alex was diagnosed with neuroblastoma shortly before her first birthday and defied doctors’ predictions that she’d likely never walk. She underwent rigorous treatment and, the day after her 4th birthday in 2000, told her mother, “When I get out of the hospital, I want to have a lemonade stand [to] help kids like me.”
With the help of her older brother, Alex put together a lemonade stand and managed to raise $2,000 for pediatric cancer research. She continued the fundraisers every year, despite the fact that she was continuing to battle her own disease. Her story spread, inspiring others to contribute to the cause; people across the nation held lemonade stands and contributed money to Liz and Jay Scott’s little girl’s charity.
In 2004, Alex succumbed to her cancer. But by that point, she and others had managed to raise more than $1 million for pediatric cancer research.
In her honor, the Scotts founded Alex’s Lemonade Stand foundation in 2005, allowing people like the Kings and the Grecos to continue to hold lemonade stands in her name. Since Alex opened her first stand, more than $55 million has been raised, helping the foundation to fund more than 250 cutting-edge research projects, create a travel program to help support families of children receiving treatment and develop resources to help people everywhere affected by childhood cancer.
In addition to raising money for an important cause, the lemonade stand provides an important lesson for the children.
“I think it’s important for Madison and her friends to continue their efforts,” said Lisa King. “It reminds them not to take life for granted and to be thoughtful of others around you, and to be grateful for what you do have.”
For more information about Alex’s Lemonade Stand or to learn how to host a stand of your own, visit alexslemonade.org.
This story is part of a five-part series on families facing a pediatric cancer diagnosis. Future installments will include what happens when a child goes into remission and community resources for families and patients. If you would like to contribute to this series, please contact Sarah Hall at firstname.lastname@example.org.
Sarah Hall is the editor of the Eagle Star-Review and the Baldwinsville Messenger. The 2012 winner of the Syracuse Press Club's Selwyn Kershaw Professional Standards Award, she has been with Eagle Newspapers since 2006. She is a Liverpool native.