CARIBOU, Maine — When Jonathan Kelley plans a youth triathlon, he fully expects some of the runners who sign up to pull out for one reason or another.
But when Kelley got an email several weeks ago from Peggy Gagnon explaining why her son Zach could not take part in this weekend’s Ready, Set, Let’s Go Youth Triathlon in Presque Isle, he could not let it slide.
Last month, the 10-year-old lover of the outdoors was diagnosed with Ewing sarcoma, a children’s bone and soft tissue cancer.
“I’ve gotten five or six of those emails from parents whose kids can’t compete and I send back replies that I’m sorry and hope to see them next year,” Kelley said. “But this really hit me [and] I looked up Ewing sarcoma and when I saw it was cancer, my heart just stopped, it was difficult to swallow and I had a big lump in my throat.”
Kelley, who lost his own father to cancer in 2004, said he took to the woods for a hike to sort out his thoughts and, by the time he got back home, he knew what he had to do.
“I just felt compelled to do something,” he said. “My first thought was to help raise money and the next thought was doing it by putting on a 5K.”
So Kelley, a certified U.S. triathlon race director, has organized “Zach’s Run,” a 5-kilometer walk or run beginning and ending at the University of Maine at Presque Isle’s Gentile Hall at 4 p.m. Sunday.
The fundraiser is after the Ready, Set, Let’s Go Youth Triathlon that same day, and is fully supported with volunteers and water stations.
Suggested registration fee is $20, but any amounts will be accepted, Kelley said.
“This is a fundraiser for Zachary and his family to assist with medical bills and travel while he receives treatment,” Kelley said.
Those expenses have already begun to add up, according to Gagnon, a single mother still trying to process the fact that what local doctors chalked up to “growing pains” less than two months ago is, in fact, childhood cancer.
In July, Zach had started complaining of a pain in his right shoulder that extended down his arm, Gagnon said.
“We pursued medical appointments and were sent to the emergency room,” she said. “They did X-rays but did not see any breaks or dislocations [and] we were told it could be a growth spurt.”
Two weeks later, her son — who was never one to complain, Gagnon said — was still saying his arm hurt, so she did a close up inspection herself and discovered what those other doctors had not seen.
“I stood him in front of a mirror and I could see his right scapula and shoulder were sitting lower than the other one, so I knew something was off,” she said. “I had him lift his right arm and then I saw the lump — it was a growth under his arm the circumference of a tennis ball.”
Since then, Zach has seen doctors and undergone “all kinds of testing under the sun” from Portland to Boston, Gagnon said.
On the way to a diagnosis, she said, Zach had multiple MRIs, PET scans, and bone marrow biopsies on both hips and on his scapula.
For many of the tests, Zach and his mother were at Massachusetts General Hospital in Boston and flew down courtesy of Patient AirLift Services, a volunteer organization that offers free flights to those in medical need.
Last week, Zach began his first round of chemotherapy at the Lafayette Family Cancer Center in Brewer.
“He had two days of treatment and there were some side effects,” Gagnon said. “We got home last Friday and he was vomiting until Saturday evening. I’m not used to seeing him that way — he is always so healthy.”
The week of Sept. 10, Zach heads back to Bangor for a five-day course of chemotherapy at Eastern Maine Medical Center.
In all, Zach is scheduled for 12-weeks of chemotherapy followed by 6-weeks of radiation and then surgery in Boston to remove that growth under his arm.
Going from watching her son ride his bike, play in the woods and lead a generally active lifestyle to keeping track of treatment appointments, medications and additional medications needed to counteract the effects of the cancer drugs, has Gagnon feeling like she is on a roller-coaster hanging on for dear life.
While she does have some insurance and Zach is eligible for a form of Mainecare, Gagnon said the bills are going to mount up and she said she was starting to panic.
Then, out of nowhere, while shopping in Bangor a few weeks ago, her phone rang.
“It was Jonathan Kelley and he told me what he was doing for Zach and the fundraiser run,” she said. “I just started crying and thinking, ‘Is this for real?’ I was shocked beyond words.”
Zach had been signed up for the youth triathlon and already assigned bib No. 63. Kelley told Gagnon that the number is being retired this year in honor of her son.
“The response has been phenomenal,” Kelley said. “I’ve been contacted by people throughout the United States I don’t even know and friends I’ve not seen since high school and they all want to know what they can do and how they can donate.”
Kelley has set a goal of attracting 250 runners to raise $5,000.
“I think we are going to blow that out of the water,” he said.
As for Zach himself, his mother said her son, who is set to start fifth grade at Teague Park Elementary School this week, may well have some of the wisest and bravest words of all to offer.
“Zach has a good heart and you see compassion in him as an 10-year-old you don’t often find in adults,” she said. “Last night he was a little anxious about starting school and said he’d want to tell people, ‘Be kind to other people and enjoy every day because you never know when it will be your last.’”
Peggy Gagnon is not sure whether her son will be able to attend the run on Sunday, but if his health allows it, he does want to be there.
“He is really my little angel,” she said. “He lifts the spirits of the people around him.”
People may donate through Zach’s Run by sending a check made out to “Tri Aroostook- Zach’s Run” to P.O. Box 927, Presque Isle 04769.
Information is also available on the event’s Facebook page at https://www.facebook.com/events/561563873893072/