Extending a Lifeline
By Stacy Milbouer
Fiddlehead Contributing Editor
Your child is diagnosed with cancer. It’s every parent’s worst fear.
But a New Hampshire organization created by moms and dads who got that same news provides knowledge, resources, assistance — and hope. September is Childhood Cancer Awareness Month, and there’s no better time to recognize the Childhood Cancer Lifeline (CCL), founded in 1995. Since then, Childhood Cancer Lifeline has given more than $800,000 to families through its assistance programs.
“I was naive when it came to cancer,” said Sandy, the mother of Matty, who was diagnosed with pediatric cancer. “The Childhood Cancer Lifeline gave me some inclination of what was to come but also gave me tips on dealing with it all…”
From its inception, this nonprofit has been a volunteer-only organization, which addresses “the practical and emotional needs of New Hampshire families dealing with pediatric cancer,” according to president and founding member, Sylvia Pelletier of Hillsborough.
“We know firsthand the trauma that a family faces when a child is diagnosed,” said Pelletier. “We also understand the challenges you’ll deal with before, during and after your child’s treatment.”
Pelletier and her husband, Guy, were two of those parents when their 4-year-old daughter (now age 32) was diagnosed with leukemia in 1991 and her son with a brain tumor the following year.
“The day of my daughter’s last chemotherapy treatment was the day my son started his first chemotherapy treatment,” she said. Her son, who is now 27, relapsed a year after that and had four brain surgeries.
In the summer of 1995, the couple got together with three other moms of children who had been diagnosed with cancer and formed Lifeline with seed money from the Ronald McDonald House Charities, which enabled them to offer their first financial assistance program.
“We all felt we had to do something for other families, so they don’t feel the isolation,” she said.
The group of five were determined to start a lunch cart program, to deliver meals to parents staying with their children at hospitals.
“We had no money at first,” Pelletier recalled. “We also dreamed of doing so many other things. Things that we’re actually doing today.”
And what the Lifeline is doing today is nothing short of amazing. In simplest terms it’s “to be there for families,” according to Pelletier. Specifically, the Childhood Cancer Lifeline offers emotional support; a family welcome package; telephone partners to talk with when a child is being treated; information on the child’s care and treatment through its website; and links to other related websites, books, articles and research on childhood cancers.
There’s a family assistance program while a child is receiving treatment, including grocery certificates, meal vouchers for hospital stays and prepaid telephone cards and an emergency fund to help with an outstanding bill. According to Pelletier, housing costs and car repairs are two of the biggest financial needs of families asking for assistance.
And not a penny of the money raised by and donated to CCL goes to pay anybody involved or as Pelletier said, “to rent some fancy office.” Every cent goes back to the kids and their families thanks to volunteers and donors.
Those volunteers include family members, friends and other people who care about children with cancer. And two childhood cancer survivors, Keegan Riley and Nick Taurasi, now sit on the organization’s board.
“I first met them both when they were five,” said Pelletier. “And they walked in as adult survivors who remember their journey and are giving back. That’s an honor I don’t’ take lightly.”
Part of that journey for the past 23 years is Camp Winning Spirit hosted at the YMCA’s 1,600-acre Camp Coniston, on a private lake in Croydon on Labor Day weekend.
Up to 40 families of children currently in treatment, recently out of treatment or who have continuing concerns with childhood cancer attend. All families have their own cabin near the water, and all their food, lodging and activities are free of charge. Pelletier said it’s a time for families to play together, support each other and have fun, including a visit to the wheelchair-accessible treehouse built several years ago, partially funded in the memory of four children who had spent happy weekends there.
There’s also always been a volunteer nurse or doctor available and hospital a short drive away. Pelletier said this year’s volunteer is also a Lifeline parent.
An anonymous donor also has funded the Childhood Cancer Lifeline’s Links! Program, which gives new laptop and accessories to recently diagnosed school-aged children so they can stay connected to school, family and friends. The laptops are wrapped up like gifts and delivered to the boys and girls in treatment.
“Treatment protocols for pediatric cancers are typically long and intense,” said Joe Cabot, a pediatric resource program manager at Dana Farber Cancer Institute. “Many of our patients remain on treatment for two years or more and endure hospital admissions that last weeks or months.
“Long hospital stays can be both isolating and boring; the laptops provided to our patients by Links! help them occupy their time and keep them connected with family and friends. This program has truly been a godsend to our patients and their families.”
The Childhood Cancer Lifeline is in it for the long haul. Families are always welcome back for camp and events. And recently Link! has also started giving the same laptop packages to childhood cancer survivors when they graduate from high school and pursue education and career training.
The organization has also established a scholarship fund for childhood cancer survivors and gave out $32,000 in scholarships this year.
“We had 18 or 19 kids in May at Pats Peak (which partners with Lifeline for many events) getting those scholarships,” said Pelletier. “Some of those were diagnosed with cancer at two or 12, and now they were heading off to their future…
“If kids are fortunate enough to survive there’s a good chance because of co-pays, medical bills, lost income salaries and all the other expenses that go along with pediatric cancer, their families couldn’t afford to save for college or post-secondary education,” she said.
Pat, Robbie’s mom, said, “The Lifeline is like one big family that understands what it’s really like to belong to this ‘special club.’ … We can cry together, laugh together and educate one another … It’s just about someone else having already walked this road and being there to guide us along on this uncertain trip that we are on.”