Like many six-year-olds, the highlight of Guinevere Millea’s school day is recess.
“I like to play with my friends and go down the huge slides,” the first grader said.
While most kids fear the tall slides or the monkey bars on the playground, Guinevere has already faced something far scarier.
Her resilience and strength have been evident from the moment she was diagnosed with leukemia when she was just two and a half years old.
“It was two and a half years of multiple rounds of chemo, and she lost her hair twice,” Guinevere’s Mom, Marrissa Millea, recalled of the earliest days of her treatment. “She was technically high risk, so she actually got more medication than a standard risk patient.”
Guinevere's cancer went into remission a little over a year ago, but her mother said the journey continues.
“A lot of people think that once they're done with chemo everything’s back to normal,” she said. “That’s just so far from the truth.”
Katie Oja is Vice President of the Jonathan Cancer Fund and is one of many working locally to help survivors.
“A lot of times we look at the end and think oh they’re cured, they’re happy, they’re healthy, and we ignore the fact that these treatments these kids are getting are up to 50, 60 years old,” she said. “They have huge impacts on little growing bodies, and there’s lasting effects that parents worry about for the rest of their lives.”
Brooke Fraser is a pediatric hematology nurse at Upstate Golisano Children’s Hospital who worked with Guinevere, explained that research used in the treatment of pediatric cancer is outdated because it evolved from adult treatments.
“This is something that’s real, we need increased funding and awareness and support for this precious population,” she said.
According to the National Cancer Institute, childhood cancer receives only 4% of federal funding.
“Our current medical research status around the country is in tatters because the current administration has pulled money for research, money for trials,” Chris Arnold, the founder and co-chair of Paige's Childhood Cancer Fund lamented. He created the fund in honor of his daughter Paige who died in 1994 after a long battle with leukemia.
His organization along with Oja and the Jonathan Cancer Fund are working to help patients financially and emotionally.
“We help patients and families from the date of diagnosis through treatment hopefully into remission and into survivorship,” he said. “Nobody can do everything, but everybody can do something, and this is our something.”
Marissa said she has noticed few people talk about the deadly disease after a child makes it to the other side of their cancer treatments.
“It has really just become a taboo subject because no one wants to talk about sick kids,” she said.
Guinevere's story has left deep impressions on everyone she meets.
“Guinevere is truly one of those kids that we were introduced to early on in her diagnosis, saw her all the way through and see her now,” Katie said. "It's a lot but we love the good stories.”
Marissa, Chris, and Katie said they will continue to fight for kids like Guinevere and make sure their stories are heard repeatedly, until there is no more cancer.
In the meantime, Guinevere is happily focused on conquering those huge slides on the playground and enjoying just being a kid again.
