Griffin Engle could often be found throwing his hands up in the air, looking at the sky, calling out, “It’s a great day to be alive!”

Griffin, a student at Cicero Elementary with big brown eyes, killer dance moves and a wicked sense of humor, was the son of Erin and Adam Engle, little brother to Grace and big brother to Everett. He loved all sports, but especially hockey and soccer, and he had a laugh that his mom said made the whole room laugh right along.

In other words, Griffin was an average kid — a special kid, a well-loved kid, but an average kid.

But then he started getting headaches.

The worst one came on his sixth birthday, Aug. 18, 2013. The headache was so bad it made Griffin vomit.

“Something didn’t set right with us, so we brought Griffin to his pediatrician the following morning,” Erin Engle said. “We were thinking he may have had a concussion.”

Griffin had fallen on the ice during a hockey game a few days earlier, so a head injury wasn’t out of the question. The pediatrician performed a battery of tests, including a neurological exam, which Griffin failed. He couldn’t even walk in a straight line. The doctor sent him to Upstate Golisano Children’s Hospital right away for an MRI.

At that point, the Engles were concerned, but they didn’t fear the worst.

“I knew ‘tumor’ was a possibility because the doctors briefly mentioned it in the list of “what it could be,” Erin said, “but for me it wasn’t a possibility for my child, for my family.”

But then the doctors came into the waiting room and gave them the news: Griffin had a “very large” tumor in the center of his brain.

“My husband fell to his knees, my parents stared in utter disbelief and I left the room,” Erin said. “Our lives forever changed that day … on Aug. 18, 2013 our lives would never, ever be the same.”

Griffin’s battle

Griffin was later formally diagnosed with Stage 4 Glioblastoma Multiform, a form of brain cancer rare in children. It has no cure. He had surgery on Aug. 29 to remove as much of the tumor as possible. The surgery caused him to lose much of the strength and range of motion on his right side. The Engles explored their options, knowing all they could do was prolong his life in hopes of future medical advancements that might save him, but no cure was immediately available. At just 6 years old, Griffin had to undergo grueling radiation and chemotherapy treatments, as well as countless hours of occupational and physical therapy to regain the use of the right side of his body.

But he never complained.

“Through all of this, Griffin was a trooper,” Erin said. “He understood he had a ‘boo boo’ in his brain, and everything we were doing was to make it better. While in the hospital we taught him meditation, which was so helpful for all his radiation treatments and for all the times he was scared. Griffin was a born athlete, so he had the natural instinct to work hard. He worked hard with a physical therapist to gain his strength back on his right side. He was able to get back on the soccer field, ride his bike and [was] even back on the ice to play hockey.”

Knowing that Griffin’s type of cancer is likely to return, the Engles appealed to the FDA for help, winning a Compassionate Use waiver for a vaccine showing good results in clinical trials in adults. The Engles sent samples of Griffin’s tumor in hopes that it could be used to create a vaccine. While they were waiting, Griffin’s tumor came back in July of 2014. In another devastating blow, they learned there wasn’t enough left of the old tumor to make a vaccine. With no other options, Griffin came home on hospice care on Aug. 1, 2014. He passed away Sept. 12.

Though cancer stole Griffin’s life, it never stole his zest for it. Erin said he was still himself to the very end.

“He knew he was sick, but I don’t believe he truly understood how sick he really was. His age was a blessing,” she said. “He still smiled, danced, loved to be with friends and family, told jokes and really was so full of life.” 

A little boy’s legacy

Griffin has been gone nearly a year, and while she usually speaks of him in the past tense, sometimes his mother slips and talks about him like he’s still here. Maybe it’s because she’s worked so hard to keep him alive in the hearts of the community members who supported him and the entire Engle family during his battle.

“We will never say Griffin lost his battle to cancer, but that he won,” Erin said. “He won the hearts of so many. We had so many people who stood by us and supported us.”

After Griffin died, Erin and Adam decided they needed to channel their grief into action and parlay the support from the community into a good cause. They started Griffin’s Guardians in December of 2014 as a way to raise money for pediatric cancer research and increase awareness of diseases like the one that claimed their son’s life.

“As a mom of a son fighting cancer, I have learned a lot. I learned that my little boy was stronger than most adults. I learned his zest for life could not be taken by the cancer and I learned his never-give-up attitude was going to carry me through his 15-month battle,” Erin said. “But what I was also shocked to learn was how very little funding is allocated to pediatric cancer research.”

Research for all kinds of childhood cancers only gets about 4 percent of the federal funding allocated to cancer research. Pharmaceutical companies provide about 60 percent of the funding for drug development in adult cancers, but almost none for childhood cancers. Because pediatric cancer is relatively rare, pharmaceutical companies looking for places to invest and get a return can’t find the volume necessary in childhood cancers in order to turn a profit. As a result, there’s not a lot of research being done into childhood cancers.

Griffin’s Guardians is hoping to change that.

“We asked Griffin to fight the biggest battle of his life while knowing in the back of our mind there were not a lot of options when his GBM returned. We, as parents, were left with no other options to save our son,” Erin said. “Parents need options. Families need options. Our children need options. That will never happen without more research.”

The Cicero-based nonprofit has been busy in the seven short months since it launched. It’s held book drives in three North Syracuse schools, collecting more than 1,000 books for Golisano. The organization has also collected more than 300 newly-sewn pillow cases for the hospital and provided aid to families struggling with expenses incurred while fighting pediatric cancer. Griffin’s Guardians has also teamed up with local artist Cherie Bourcy, who paints the child’s radiation mask once the child completes radiation treatments to celebrate the end of treatment.

But the biggest accomplishment came last month when the foundation partnered with St. Baldrick’s Foundation, a pediatric cancer charity that raises money primarily through head-shaving events.

“We have given St. Baldrick’s a check for $25,000 to partially fund a pediatric cancer research grant in Griffin’s honor,” Erin said. “Griffin’s Guardians’ reach now far exceeds just to Central New York, but across the country. We are committed to finding a cure so no other families have to go through this loss. This wouldn’t be possible if it wasn’t for the tremendous amount of support we have received.”

The organization also has a support group for siblings of children fighting cancer. This came from Griffin’s older sister, Grace, who was 8 when Griffin was diagnosed.

“She was old enough to know the seriousness of Griffin’s sickness, she had the smarts to know what could happen and she asked the very hard questions for a parent to answer,” Erin said. “She worried — with every appointment he had, she always had to know the results. She grew up fast and learned more medical terminology than any 8-year-old should know. Ultimately she lost her very best friend. That’s what cancer does to siblings.”

Grace’s Sibling Sunshine group sells homemade crafts to fund the program. Grace’s goal, Erin said, is to “make the siblings feel special, too, and acknowledge their strength and bravery throughout the cancer journey.”

Gold Tie Gala

Next for Griffin’s Guardians is the inaugural Gold Tie Gala, which will take place from 6:30 to 11:30 p.m. Sept. 18 at the Lake Shore Yacht and Country Club in Cicero. Tickets go on sale Aug. 1. The nonprofit was looking for a signature event to help raise money, and a gala on Oneida Lake seemed a perfect fit.

“Gold is the color cancer ribbon designated for childhood cancer, and September is the month designated to [recognize] childhood cancer, so to us and everyone involved it will be a very special but also meaningful night,” Erin said. “We hope the night will give a glimpse into the fight these families with children with cancer are up against, but also what we as a society can do when we come together.”

If you’re interested in sponsoring the gala, email [email protected]. More details are also available at GriffinsGuardians.org.

The Engles want the gala to become an annual event during which they can not only raise money for the nonprofit, but also honor and remember their vibrant, lively boy and other children like him.

“We hope it’s just the beginning to many special moments in creating change in the world of pediatric cancer,” Erin said. “We need to bring change for these children and their families. We believe if we take our cues for courage and determination from Griffin and the other brave little heroes battling cancer there is no way we won’t make a difference.”

Erin said she’s already seen how small, grassroots efforts at making that kind of change have had an effect. She knows Griffin’s Guardians can do the same. 

“When my daughter Grace asked me one day, ‘Really, Mom, how is our little Griffin’s Guardians going to spread across the country when we live in Cicero?’ I said, “Breast cancer awareness started in a small little town somewhere, years ago, with a group of dedicated people and look at how far it has gone,’” Erin said. “I told her I believe that, yes, we will start it in our little community and with those that are close to us, but it’s going to catch on. We will do great things with this organization. I believe it with all my heart that we will make a difference, we will bring awareness, we will help fund research and be part of giving other children more hope, more support and, most importantly, more options to fight and beat their cancer. This is just the beginning for Griffin’s Guardians.”