In the Loop

News and views from across Mayo Clinic

August 16, 2018

Mourning Young Cancer Patients Both a Heartbreak and a Privilege

By In the Loop

Mayo Clinic child life specialist Randy Mc Keeman was moved to find out he was recently acknowledged in the obituary of 5-year-old cancer patient Garrett Matthias.

From a distance, it looked like a carnival. There were bouncy houses, superheroes, cotton candy and snow cones. But this party had a somber purpose. It was a farewell to Garrett Matthias, a one-of-a-kind 5-year-old who captured headlines and hearts with his unique obituary and funeral plans. "Funerals are sad," Garrett says in the obituary penned by his parents, Emilie and Ryan, with his input. "I want 5 bouncy houses (because I'm 5), Batman and snow cones."

Emilie and Ryan delivered on all fronts for their son. "We really tried to use his words and the way that he talked," Emily tells the Des Moines Register. "What I really didn't want was for his obituary to be ordinary and to have a really sad funeral. We've cried oceans of tears for the last nine months."

During those months, when Garrett was receiving treatment for stage 4 rhabdomyosarcoma at the University of Iowa and Mayo Clinic, his parents attended funerals for other young cancer patients they'd met. When they'd come back, Garrett would ask why they were sad. That led to the type of conversations no parent wants to have with their young child. "I'd say things like, 'When I die, I want to turn into a star,'" Emilie tells the publication. "He'd say, 'I want to be burned like in "Thor," and then I want to become a gorilla.'"

Emilie and Ryan started writing down Garrett's comments, and after learning his cancer was terminal, they began asking him additional questions. Favorite superhero? "Batman … and Thor, Iron Man, the Hulk and Cyborg." What did he love? "Playing with my sister, my blue bunny, thrash metal, Legos, my daycare friends, Batman and when they put me to sleep before they access my port." What did he hate? "Pants, dirty stupid cancer, when they access my port, needles and the monkey nose [scented anesthesia mask] that smells like cherry farts. I do like the mint monkey nose at Mayo Radiation, and that one guy that helped me build Legos (Randy)."

That one guy is Randy Mc Keeman, a child life specialist at Mayo Clinic's Proton Beam Therapy Program. Mc Keeman tells us he was "blown-away flattered" to be mentioned in Garrett's obituary. "To have that obituary come out, and to know that I made a difference is very bittersweet," says Mc Keeman, who keeps a photo of himself and Garrett — a gift from the Matthias family — in his office.

We asked Mc Keeman how he and his colleagues cope with the loss of young patients they care for and care about. "You do feel sadness and you do shed tears," Mc Keeman tells us. Staff grieve together, he says, sharing stories and supporting each other after a patient passes away. "But there's another side as well," Mc Keeman says. "I feel honored to have known Garrett and to have been a part of his life. It's a privilege to be with patients and their families and to be in a position to help."

Helping others is on the Matthias family's minds as well. They hope sharing Garrett's story will lead to increased research funding for pediatric cancer and someday, a cure. "If it inspires one person to donate or one person to become a doctor and find a cure for cancer, I think that's an awesome legacy," Emilie tells the Register.

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Tags: Patient Stories, Pediatric cancer, Proton Beam Therapy Program, Randy Mc Keeman, Staff Stories

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