Today would have been Griffin Engle's 10th birthday. Instead of helping him celebrate a milestone, dozens of his friends and family members will gather at Plank Road Park in Brewerton, New York, where Griffin played soccer so they can trade stories, cry on each other's shoulders, have a little fun and tell one another about how they were fortunate to know the fun-loving boy, who died three years ago after losing a brief fight with pediatric cancer.
"My wife and I have a celebration at the park and soccer field where he played," said Adam Engle, Griffin's dad and the superintendent at Lake Shore Yacht and Country Club in Cicero, New York. "Friends and family get together and we all celebrate Griff."Griffin Engle's story, and that of his family, is a complicated tale woven with immense tragedy, bravery, loss, heartache and an overwhelming desire to help others traveling a similar path.
The middle of the Adam and Erin Engle's three children, Griffin was diagnosed with stage 4 glioblastoma multiforme, an aggressive form of brain cancer, shortly after his sixth birthday in 2013. He underwent surgery and a series of radiation and chemotherapy treatments to no avail. He died Sept. 12, 2014, just 25 days after he turned 7. Since then, his family has worked tirelessly through Griffin's Guardians, a 501c3 foundation they established in his memory, to help others who are experiencing similar situations.
The foundation, which is supported through a series of annual fundraising events, provides support and financial help to families of children in central New York who are fighting cancer.
Their effort is a true family affair.
Griffin Engle's story, and that of his family, is a complicated tale woven with immense tragedy, bravery, loss, heartache and an overwhelming desire to help others traveling a similar path.
Erin is instrumental in the day-to-day management of the foundation. Griffin's siblings Grace, now 12, and son Everett, 5, help out, as do grandmothers Rita Griffin and Judy Engle.
Financial help to families comes in the way of assistance with bills or helping to pay for personal items for families of children going through prolonged stays at the State University of New York Upstate Golisano Children's Hospital in Syracuse.
Since 2016, the foundation helped 77 families at Golisano.
"When we were going through this, everywhere we looked someone was supporting us," Erin Engle said. "We knew others didn't have it as good as we did.
"After Griff passed away, I told the kids we have to do something good with this and help other people. They agreed and were on board."
The foundation has taken on many forms.
Every time Griffin visited Golisano, he went to the hospital's reading room for a new book. Today, Griffin's maternal grandmother, Rita Griffin, manages a book drive that continues throughout the year to provide the hospital's eager readers with a perpetual supply of new books. Paternal grandmother Judy Engle heads an effort that provides patients with personalized pillowcases.
When a child is admitted into the hospital, each receives a unique, kid-themed pillowcase.
"It's so simple," Erin Engle said. "But it makes the hospital a little less scary and more like home."
Patients and parents aren't the only ones who struggle when a child has cancer. Watching a brother or sister go through cancer can be difficult for siblings, too.
Started by Griffin's big sister, Grace's Sibling Sunshine provides brothers and sisters of patients with a gift to remind them they are strong and brave, as well.
Erin Griffin personally interviews each family that seeks help. During one interview process, Grace asked her mom whether the patient had a brother or sister, because this affects them, too.
"I had sort of shrugged it off, but she's right," Erin said.
"She shops for them for a gift specific to their likes to let them know they are strong and brave, too. She justs wants them to know what they are going through is hard and she is thinking of them."
Radiation treatments for glioblastoma multiforme are very site-specific, so it is important that patients remain absolutely still during the process. Anyone who has children knows what a challenge that can be during the easiest of times, much less something stressful like radiation treatment. To keep patients from moving during the process, they are fitted with a mask that covers their head and shoulders, essentially pinning them down so they cannot move.
"It's terrifying for a child," Adam Engle said. "The only other option is to put them out. Then they're their all day. But if they can put the mask on and relax, it's over in a half-hour. But it's hard to get a kid to do that."
In Griffin's case, preparing for a month's worth of these procedures meant meditating with his mother, which gave him strength to endure the procedure. To help others through the process, a local artist paints the masks with images of superheroes and princesses.
When we were going through this, everywhere we looked someone was supporting us. We knew others didn't have it as good as we did."
Helping others has helped the Engles as they continue through what doubtlessly will be a lifetime of mourning that comes with losing a 7 year old. It's a process that Adam has described as "a daily hell."
"I don't know how to explain it. It's so bad and so sad."
Those same emotions are what drive Erin to help others.
"For me, being able to lessen anyone's financial burden has been huge," Erin said. "Helping us carry on Griff's legacy and continue the way he lived his life is rewarding in itself.
"I've walked this path that others are just starting."
Griffin first showed signs that something wasn't right on his sixth birthday. That's when he began dropping things and complaining of headaches. His party was planned for the following day at Plank Road Park, but that was delayed in lieu of a visit to the doctor. By the time his seventh birthday party took place at the park, Griffin's condition was much more grave.
"As hard as it was for us, we are adults," Erin said. "But 6- and 7-year-olds don't understand what's going on. They don't know anything about cancer except that their friend has it and he is very sick. We thought it was important for them all to be together one last time."
Less than a month later, Griffin was gone.
Even before Griffin was sick, one of his favorite sayings, his mother said, was "It's a great day to be alive."
In retrospect, it was profound, especially for someone so young.
Thanks to the ongoing efforts of his family, other child cancer patients and their families in the Syracuse area now carry a similar message of hope.
"He said that all the time, and that's just another glimpse into our little guy. What other 5-year-old says that?" Erin said.
"That Griff touched so many lives even though he was alive just seven short years, that speaks volumes. He continues to touch lives today, and I'm honored to be his mom."