May 19, 2014 Tami Scott Uncategorized
For the 17th consecutive year, Paige’s Butterfly Run will take place on Saturday, June 7, in downtown Syracuse.
The event began in 1997, three years after Paige Yeomans Arnold, 8, a student at Palmer Elementary School, died from chronic myelogenous leukemia (CML). CML is a disease in which the bone marrow makes too many white blood cells. It usually occurs during or after middle age and rarely occurs in children.
“We actually just had our 21st anniversary of her diagnosis,” said Chris Arnold, Paige’s father. “She was treated here in Syracuse from May 1993 through March 1994. In March of ’94, we went to Boston Children’s Hospital for a bone marrow transplant because at that point, that was her only chance of survival.”
This should have been her cure. Instead, it took her life.
“Paige got the marrow, but her new immune system did not recognize Paige’s body as home,” said Arnold, noting the woman who donated her marrow was the only one in the entire donor database that matched all six HLA, or human leukocyte antigen, markers. “Her immune system attacked her major organs and killed her. You expect a little bit of that with any unrelated match, even if it’s perfect, but it couldn’t stop it.”
The bone marrow transplant took place in June. Paige died in mid-August, leaving behind her parents and sister Alex.
About five years later, a new cancer medicine called Gleevec was introduced. It’s the first treatment for nearly everyone with CML — adults and children alike.
“It puts you in remission and it kind of makes it go away. It’s a good solution, a path to take,” Arnold said.
According to a 2008 article, “Gleevec: the Breakthrough in Cancer Treatment,” by Leslie A. Pray, some say Gleevec’s success rate has transformed CML treatment. In the past, the only options patients had were either bone marrow transplantation, like Paige had, or daily interferon infusions. Before Gleevec, only 30 percent of patients with CML survived for even five years after being diagnosed. With Gleevec, that number rose to at least 89 percent.
Since 2009, all net proceeds from Paige’s Butterfly Run have gone to the Dr. William J. Waters Center for Children’s Cancer and Blood Disorders at Upstate Golisano Children’s Hospital for research and patient programs. Up to 2009, proceeds were also slated to benefit a college scholarship fund in Paige’s name at C.W. Baker High School. In those 11 years, the Arnolds have endowed two perpetual scholarships and, because of that, no longer put new money into the Baldwinsville Community Scholarship Foundation.
Paige was 6 years old and a first-grader at Palmer Elementary School when she was diagnosed with CML. She celebrated her eighth and final birthday at Children’s Hospital in Boston, where she passed away.
“She was just lovely,” her father said.
In fact, Arnold recently ran into his daughter’s kindergarten teacher the other day, he said, and she remarked on Paige’s selfless spirit. Paige had some good news to share with her class, but it was another girl’s birthday. When the teacher had asked her to share her news, Paige said no. It was her classmate’s day and she didn’t want to spoil her moment.
“She handled things very gracefully,” Arnold said of her illness. “She knew she was sick and went in the hospital with a bone marrow transplant, and that’s a horrific process for a person to go through … [but] she was graceful. She just really handled it [all] with such a sense of class.
“I’ve said this before,” he said. “She taught me how to die.”
“It wasn’t our idea,” said Arnold of the run. “We were just doing the best we could, dealing with Paige’s death, trying to raise Alex in a way that, you know, she just lost a sister. And we were trying to make our family environment as whole as possible while still acknowledging the hole that we all experienced.”
But when some teachers at Palmer realized in 1997 that it would have been Paige’s last year at the school, they asked her parents’ permission to honor her memory with an event.
“We were dumbfounded by the generosity of their intentions and said, ‘Absolutely, please,’” Arnold said.
They decided to do a walk on the school campus so all the children, teachers and parents could get involved. They put the entire event together within a month. That first year drew 225 people, raising $2,200. The event would be held at Palmer each year through 2007. In 2008, they were invited to relocate to downtown Syracuse during the same weekend as the city’s annual Taste of Syracuse.
“We kind of hit the ceiling [at Palmer] in terms of handling everybody well logistically,” he said.
So they accepted the offer.
In 2013, Paige’s Butterly Run drew about 2,500 participants.
Paige’s Butterfly Run, Inc. is an annual fundraising family-friendly event that offers three components: a
certified 5K race, a 3K Fun Run/Walk and a 40-yard Caterpillar Crawl for kids ages 5 and under. Formed in 1999 as a not-for-profit 501c3 corporation, the annual run raises funds for pediatric oncology research and patient programs at Upstate Golisano Children’s Hospital.
Held at the James M. Hanley Federal Building, 100 S. Clinton St., Syracuse, families and individuals can expect to enjoy a morning of fun and camaraderie. Local broadcaster Rick Gary of Sunny 102.1 FM is the event host.
“When someone hears it’s a run, they may automatically default to ‘Oh, I’ve got to go out and race.’ No matter what you’re motivation for being there, we want to treat you as a customer and make it a good experience for you,” Arnold said. “You don’t have to be a racer. I don’t run. I ride a bike. The idea is to come, participate, pay your registration fee [and] hopefully to fundraise.”
Race for Roman, the top fundraising team so far this year has already surpassed its goal of $10,000, raising more than $16,000 as of press time.
“It makes such a difference when people fundraise,” Arnold said.
The online pre-registration fee is $25, available only through Tuesday, May 27. From Wednesday, May 28 through Tuesday, June 3, the fee increases to $30. The paper registration fee is $30 for entries postmarked by May 27, and the registration fee on the day of the event is $40. If you register online, a fundraising page will automatically appear, and, if you choose, can be set up to share and email sponsors. Go to pbrun.org for more information.
“To be able to do this and be able to help families that are in a situation we were in — and hopefully they come out of things better than we did — there’s a good feeling to be able to do that,” said Arnold, noting that at Golisano Children’s Hospital, staff sees about 50 new cancer diagnoses each year. “We can’t do anything more for Paige, but maybe we can help some others.”