Foundation turns grief into support for children with cancer

On Nov. 8, Long Island families arrived to have holiday photos snapped at 317 Main Street in Farmingdale.

The party room of the restaurant hummed with a merry mood and
wall-to-wall festive fleece as groups waited for their turn to grin and say “cheese.”

The Volpes came from Bellmore, while the Gandarillas family arrived from Nesconset. Colleen Tanaka and her sons pulled in from Port Jefferson Station.

“It’s fun to get dressed up,” said Tanaka, a care coordinator for kids with special needs. “Our photos came out even better than we hoped.”

Every picture tells a story. These complimentary portraits shared something more significant than plaid pajamas and color-coordinated tops. Everyone was a guest of the Michael Magro Foundation, a nonprofit that supports children with cancer and their families. Putting smiles on their faces is one part of the organization’s mission.

Colleen’s third-grader, Tenzin, was diagnosed with leukemia in June. Now 15, Matthew Gandarillas was diagnosed with liver cancer when he was 8 months old. He went through chemotherapy, and when he turned 1 had half of his liver removed; he’s been cancer-free since.

For Carsyn Volpe, who’s 13, picture day coincided with a momentous occasion hours earlier. His mom, Bernadette, explained that her son had just completed radiation treatment for stage 4 neuroblastoma. He marked it with a celebratory ritual.

“He just rang the bell,” said Bernadette, who wore a half-dozen rubber wrist bands including one that read “Courage for Carsyn.”

Transforming grief

Longtime Hicksville residents Terrie and Paul Magro know the significance of that bell.

In 2004, their 11-year-old son Marc was diagnosed with Hodgkin lymphoma. “Marc is my cancer survivor,” said Terrie. “He’s 29 years old now.”

Marc, who now lives in Manhattan, was in the middle of treatment when his 13-year-old brother Michael was diagnosed with leukemia on June 8, 2004. Michael died the next month.

Terrie and Paul sought solace in the usual places. They attended a bereavement group for parents as they grappled with the devastating loss.

She listened intently as other moms and dads described the ways that cancer had turned their lives upside down — emotionally, financially, every which way.

Terrie, now a retired nurse-case manager who also worked in medical sales, and Paul, now a retired chef and culinary instructor, related to the stories in many ways, but Terrie was determined to transform her ache into action. “I’m a doer and a go-getter,” said Terrie. “I told Paul, ‘We have got to do something to keep Michael’s name alive.

“ ‘We’re going to create a legacy for Michael and help these people who are struggling. We’re going to make a difference in these people’s lives.’ ”

They did, and they have. The Michael Magro Foundation was established in 2005.

Financial assistance

The foundation now helps hundreds of families each year — not only in New York but in other states as well. Thanks to coordinated fundraising efforts it brings in about $325,000 annually.

Most of that money goes to help children with cancer and their families. Some of the families the foundation supports have children with other medical conditions, autism or Down syndrome.

Along with its executive and advisory boards, the foundation is a family enterprise. Terrie, Paul and Marc, who’s a board member, each play a role.

Terrie is the driving force and the face of the foundation. “Most people know me,” she said. That’s a logical consequence of her “constantly trying to get our name and our mission out in front of people.”

That includes giving presentations, speaking with corporations and other organizations and planning fundraisers. She collaborates with social workers and child life specialists at several Long Island hospitals who work day to day with the families of children in treatment facing unmet financial needs.

The hospitals include Cohen Children’s Medical Center in New Hyde Park, Stony Brook Hospital’s pediatric oncology and NYU Langone Hospital-Long Island in Mineola.

Terrie’s personal experiences with cancer means “she knows what it’s like to be on the other side of this,” said Stony Brook certified child life specialist Lauren Sharaby. “She knows what these families need. She’s there and ready to help. I’ve called her in the middle of the night several times.”

The foundation’s mission is to help offset bills of these families, said Terrie, explaining that medical insurance doesn’t cover all of the expenses that arise when people are faced with a cancer diagnosis.

In many instances, parents have to reduce or leave work when their child gets sick with cancer, and the bills don’t stop. The foundation steps up to help cover insurance copays, rent, parking, gas, utilities, groceries, travel and other costs.

“When we started out, if somebody needed help, we would pay up to $500 for a family,” said Terrie. “I’m at a budget now between $2,000 and $3,000 per family, with most around $1,500.”

Ongoing support

Each case is different. “It’s not one and done,” Terrie said. “It’s ongoing with families because the cancer treatment can last a long time, and the kids can get sick again.”

The Volpes have faced that challenging reality.

“When Carsyn was first diagnosed in August of 2011, we were handed a huge folder with gift cards and journals to keep track of everything,” said Bernadette. “It was actually from the Michael Magro Foundation.”

Carsyn was cancer-free for more than eight years. “We met Terrie when he relapsed in November 2020,” said Bernadette. Terrie reached out to the family when Carsyn relapsed again in January 2022.

That’s how Terrie rolls: She’s hands-on. She reached out to Michele Gagnon-Sheikh, a widowed single mom who lives in Shirley, after her 21-year-old son, Zachary, relapsed in mid-September.

He was in his fourth year at Rochester Institute of Technology, where he’s majoring in video game design and development, when his cancer returned.

“The Magro Foundation helped get me airfare to Rochester and a hotel so that I could be with my son,” said Gagnon-Sheikh, a former hairdresser who works for Nespresso. “I didn’t have money to get up there.

“Terrie just paid my mortgage last month,” she continued. “She bought me some oil so that I could have some heat.”

This was Zachary’s second relapse. He was first diagnosed with cancer of the soft tissue in 2009. “The other times it was in his head, behind his sinus cavity,” said his mom. “Now it’s in his heart.”

Zachary is now at Stony Brook Hospital. After so many days and nights spent there, Gagnon-Sheikh calls it “Hotel Stony Brook.” That term is a telling reminder of how cancer can make families feel displaced and disconnected.

The Magro Foundation is a source of connection, a lifeline. Terrie understands, Gagnon-Sheikh added, “what it takes to have a kid who is not going to be sick for a week or two but for months and even more.”

‘Level playing field’

Because cancer doesn’t discriminate when it comes to personal income, the foundation has always followed an inclusive philosophy.

“I honestly don’t care what a family’s financial status is,” she said. “Whether they make $50,000 or $250,000, everybody is on the same level playing field when they have a child diagnosed with cancer.

“Most people are living at the level or above their income,” she added. “Not a lot of people have a big reserve of money.”

The foundation is family centric. “The entire family unit is what’s affected when a child is going through cancer,” said Terrie. In August the organization donated about 600 backpacks filled with school supplies to families with kids in treatment and their siblings.

Tanaka’s sons, Tenzin and Paxton, who’s in fifth grade, each got backpacks through the foundation. “It’s complicated. Any time Paxton is recognized along with Tenzin it makes a difference,” she said. “It’s a reassurance he’s not left out.”

The foundation takes a three-pronged approach to fundraising. In addition to forging corporate partnerships and applying for grants, charitable events are a prime source of income. Such fundraising ranges from large-scale golf outings and culinary tastings to smaller events.

Cultivating community

A robust community network is an invaluable asset. Terrie and foundation board members have fostered relationships across Long Island with businesses, like 317 Main Street, that are eager to offer their space at reduced rates. More money goes to families that way.

The foundation got a deep discount on the rate charged by Alex M. Wolff, the professional photographer based in Jericho who took the holiday pictures. He was introduced to the foundation at one of its large culinary tastings.

Taking holiday pictures was “about separating people from their issues,” he said, “and giving them a moment of joy. I do every event that I can with Terrie.”

Board member Dawn Dardzinski, who runs D2D Consulting from her home in East Meadow, is another big believer in the foundation. She’s been involved with the organization for about six years.

On Nov. 13, she organized a “Paint & Sip” brunch benefit at Publicans in Manhasset, which has become a go-to business for her foundation fundraisers.

Twenty participants enjoyed a two-hour painting tutorial, tasty food, unlimited drinks and raffles. The event raised just over $2,000.

“It was just a nice way to spend an afternoon doing something for a good cause,” said Arleen Tucker, a retired electronics project manager who has also supported the foundation’s block party fundraisers.

“It’s important to give back,” added Tucker, who appreciated painting a pair of cozy mittens adorned with snowflakes. “They’re about warmth.”

So is the Michael Magro Foundation. “We’re touching lives in a small but impactful way,” Terrie said. “We’re putting on a Band-Aid. We’re trying to help.”