According to a story reported by the New York Times, 5-year-old Garrett Matthias had already thought about what he wanted his funeral to be like. He didn’t want it to be sad; he wanted it to be like a carnival. When a biopsy showed that Matthias had a rare form of cancer called rhabdomyosarcoma, his family started asking him the hard questions about life and death. Garrett’s answers, it turned out, wrote an obituary by themselves.
Rhabdomyosarcoma is defined by NIH as the “most common soft-tissue sarcoma of childhood.” Though there have been recent medical advancements in research surrounding the condition, the prognosis for those children that have rhabdomyosarcoma remains poor. To read more about pediatric rhabdomyosarcoma, click here.
Soft tissue sarcoma is a rare form of cancer that occurs in the soft tissues of the body. The soft tissues are responsible for connecting and supporting body structures, and there are many forms of soft tissue sarcoma. These different types vary by location in the body as well as age of onset. In Garrett’s rare case, rhabdomyosarcoma, the levels of morbidity and mortality are high. To learn more about soft tissue sarcoma, click here.
Words from a 5-Year-Old
“Funerals are sad,” Garrett said when asked about what he wanted his funeral to be like. “I want five bouncy houses (because I’m 5), Batman and snow cones.”
He told his parents that he wanted “to be burned” and “made into a tree so I can live in it when I’m a gorilla.” After his death, Garrett would reincarnate, of course, as a gorilla “and throw poo at Daddy!”
In the 10 months that Garrett battled rhabdomyosarcoma, his parents gathered a plethora of quotes like these to cherish even after his days. Garrett’s words have since then been compiled into an obituary, which you can read online here.
Garrett began feeling ill at age 4.
“He came home from preschool one day and it looked like he had a stroke,” said Emilie Matthias, Garrett’s mother. “The left side of his face looked like it was paralyzed when he smiled.”
Doctors were quick to say he had Bell’s palsy, and consultation after consultation had given his parents that same diagnosis. One doctor, however, believed it was something very different. A month later, a biopsy showed that Garrett had rhabdomyosarcoma, an inoperable rare form of cancer.
Treatment for his condition required 54 weeks of chemotherapy along with six weeks of radiation. The entire Matthias family traveled 20 miles from their home to Iowa City to begin treatment for Garrett. The good news was that the cancer hadn’t yet spread to his brain.
According to his obituary, Garrett was labeled “forever a prankster,” a kid who was always playing around with doctors and nurses. He teased them with whoopee cushions and snuck clothes pins onto their scrubs. When someone would say, “See ya later, alligator,” Garrett’s response would be, “See ya later, suckas!”
In the hospital, Garrett was known as “Garrett Underpants” due to his hatred of wearing pants and shorts. He told his parents that he wanted to someday become a professional boxer; when that happened, he dubbed his future self “The Great Garrett Underpants.”
30 weeks of treatment in, Garrett began getting headaches that were so bad he lost his ability to speak.
A Shortened Trip
This was the beginning of what Garrett’s family hoped would never come.
“It had migrated from the temporal bone to the lining of his brain, which is what regulates the spinal fluid,” said Ms. Matthias. “At that point they came and told us that his cancer was treatment-resistant.”
The family planned to use Garrett’s Make-a-Wish Foundation trip on a vacation to Florida, but because his condition had become so severe, they settled on a trip to a nearby zoo in Omaha.
“He got to interact with the gorillas and he had a great time,” said Ms. Matthias.
The zoo trip unfortunately had to end early.
“We went to the zoo on Friday morning and by Friday night he couldn’t walk,” added his mother. This was also when the cancer had spread to Garrett’s spinal cord.
Garrett passed away shortly after.
But don’t fear, because all those words that were collected over Garrett’s short life were not in vain. His parents held onto every phrase and wish, and there will absolutely be snow cones, bouncy houses, fireworks, cotton candy, face painting, and spin art at his “Celebration of Life.”
“A private burial of Garrett’s ashes will be held at a later time once his parents figure out how the hell to get his ashes made into a tree and locate a nature preserve, so his tree resides in a protected area,” read the obituary.
When the cancer had moved to Garrett’s spinal cord and he became paralyzed, his grandfather, Mr. Krueger, came to visit him in the hospital.
“Garrett looks at me and says, ‘Grandpa, come sit in this chair, it will be more comfortable for you,” said Mr. Krueger.
Garrett’s story, though a heartbreaking one, also serves as a reminder to remain full of life in even the most challenging times. To read more about Garrett, click here.