One year after the 9-year-old’s death, his parents are leading efforts on two fronts to support other kids with life-threatening illnesses.
By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org
It’s been a year since Kevin and Heather Garvey have seen their son’s sweet face, heard his laugh, and felt the warmth of his hug.
A year of sadness but also traces of hope as they embark on a mission to save other kids and families from the pain they went through.
Mason Garvey passed away June 25, 2020, two years after he was diagnosed with stage 4 embryonal rhabdomyosarcoma, an aggressive cancer that attacked his pelvis and lungs.
The 9-year-old boy nicknamed Mighty Mason left behind a huge fan club, most importantly his family, but also friends who became like family over the course of his illness. People like Indianapolis Colts cornerback Kenny Moore and Colts mascot in human form, Trey Mock.
Those friends brought such joy to Mason’s life during his illness, an illness he regarded as an inconvenience, for the most part, something that interfered with his zest for playing sports.
During his cancer fight, Mason had all of the therapies, the trials, the treatments that his young body could withstand. How could his parents not do everything in their power to save him?
When the tumors kept growing, his oncologist at Riley Hospital for Children, Dr. Jacquelyn Carter, gently told the Garveys that it was OK if they decided he’d had enough, according to Heather.
Yet how could they quit?
“She said I will do whatever you guys want to do,” Heather said. “But as a parent, you don’t say that’s OK, let’s stop. It wasn’t an option.”
The family, which also includes Mason’s younger sister, Kinley, even moved to Seattle for six weeks so Mason could participate in a trial treatment at Seattle Children’s. When it failed and the family returned home to Bargersville, Indiana, Mason declined rapidly.
“It happened so quickly,” Heather said. “We could physically see his tumor growing. He couldn’t sit or walk. It was at that point that we knew, enough is enough. He wasn’t strong enough to withstand anymore. We had to say we’re done.”
Their little boy, who loved to read, play video games and tell knock-knock jokes, who got to run out onto the Colts field on his birthday, and who grew to love Moore as his brother, died at home one year ago tomorrow.
“Mason was the bravest, strongest, toughest kid we ever met,” his dad said after his son’s death. “We told him countless times that we had no idea how he had gotten so tough, but we were so glad he did. He encouraged us to keep fighting and showed us that God only gives the toughest battles to his strongest soldiers.”
The past year has been filled with painful firsts without Mason – birthdays, Thanksgiving, Christmas, Mother’s Day and Father’s Day. The Garveys both have continued working full time, a much-needed distraction, Heather said.
Far from feeling strong, she said, “We have felt like we could break at any moment. Having to be present for our daughter, Kinley, has made a huge difference in how we have chosen to go about our lives over the past year.”
There is a part of them that feels relief that Mason is no longer in pain. Instead, they carry it for him.
“We have an amazing support system,” Heather said. “We are so thankful to all of them for helping us along this journey and new way of life.”
So the Garveys are pressing on, fighting for other kids the same way they fought for Mason. They are raising money for two different initiatives – research on Mason’s tumor by the Herman B Wells Center for Pediatric Research at IU School of Medicine (for which they’ve already raised $20,000) and the Mighty Mason Fund for Palliative Care.
The Garveys had agreed to donate their son’s tumor for research earlier, but they had no idea it was part of the Wells Center project until conversations were already underway to donate the $20,000 they had raised.
“They got his tumor; it is growing in the lab,” said Heather, who was overwhelmed at the news. “It helped to start funding the research that Mason is directly a part of and that’s powerful. We are super proud, and we know Mason would be proud to know he is helping other kids.”
Funding for pediatric cancer research is woefully inadequate, Kevin said. From 2008-2017, the National Cancer Institute spent an average of 3.97% of its research funding on childhood cancer research.
“We have to educate folks,” he said. “We feel such a responsibility to get the conversation started. Everyone cares, everyone loves children, everyone wants to do right by kids. We’ve seen it and felt it, but we have to do better. The number of kids experiencing cancer and other terminal illnesses is not declining.”
As mentioned earlier, it’s not just research they are championing, but also more support for Riley’s palliative care program in coordination with the Riley Children’s Foundation.
To learn more about each initiative:
https://give.rileykids.org/campaign/mighty-mason-fund-palliative-care/c329973
https://give.rileykids.org/campaign/mighty-mason-fund-rms-research/c333852
Photos submitted and by the Indianapolis Colts
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