Home Family Childhood Cancer Awareness Month underscores need for research funding

Childhood Cancer Awareness Month underscores need for research funding

The Murrays.

In 2015, 8-year-old Ty Murray’s hips were uneven. It hurt for him to walk and his left leg was slow growing. Ty was not experiencing your typical adolescent growing pains, but the effects of chemotherapy. When he was much younger, he received 27 rounds of radiation in a single spot. The impact came to be seen in his growth plate.

“It was radiated so much, it wasn’t fusing,” Carmen Murray, his mother, said in a recent phone interview.

Ty and his bear snuggle.

At 16 months old, in May 2008, Ty was diagnosed with stage 4 neuroblastoma, a type of cancer that forms in nerve cells. It is the most common cancer in infants, as most cases are diagnosed by age 5. The United States has 800 news cases every year. In general, 43 kids are diagnosed with cancer every day.

Now 13, Ty is surviving cancer with no evidence of disease. However, Murray and her family continue to raise money for childhood cancer research. She is on the board for Unravel Pediatric Cancer, a nonprofit that raises money for pediatric cancer research and awareness for the needs of such funds. 

“[The American Cancer Society] gives less than a penny of every dollar donated to childhood cancer research,” Murray explained. “The heartbreaking thing is there’s no money going to our kid’s cancer.” 

Ty’s experience with neuroblastoma

Ty and his bear stay safe.

Doctors told the Murrays that Ty had a 30 percent chance of survival for five years if he responded to treatment. Because Ty’s cancer was “the worst of the worst,” such treatment included high-dose chemotherapy, multiple surgeries and a stem cell bone marrow transplant, which essentially wiped his immune system. After all that, there was still evidence of the disease. 

Ty’s oncologist then recommended an antibody trial at Memorial Sloan Kettering Cancer Center in New York City, something Murray had already been looking into. Ty was approved for the trial and they periodically flew coast to coast for the next two years. Murray described the trial as successful, as the treatment doesn’t affect blood counts and you don’t lose your hair. However, it was extremely painful. 

“It’s an intense half hour and then they’re out,” she said. “He sleeps it off and then by the evening, he’s fine. It was weird.”

After the trial, Ty still had one more spot of cancer on his left leg. Chemotherapy wasn’t an option at this point, as it wasn’t working. The doctors at Sloan Kettering then recommended a method used for bone cancer treatment, which basically injects patients with liquid nitrogen. He was the third child to receive this treatment. Finally, on April 7, 2010, Ty showed no evidence of disease and hasn’t since. 

Confidence in the future

Ty, the soccer fan!

In addition to his growth plate issues, Ty now has high frequency hearing loss. He is missing 8 adult teeth because some of his teeth never even formed as a result of doing chemotherapy as a baby. For someone with the same experience as Ty, Murray said there is a 4 percent chance of not having any complications by the time you hit 30. Still, she knows how fortunate their family is. 

“Ty is lucky,” Murray said. “I don’t know why he survived and a lot of his friends didn’t.” 

Now that Ty is older, he wonders more about his survival. In addition, like any teen, he wants to fit in. This means not wearing hearing aids and keeping his life story generally to himself, though teachers have encouraged him to share. Aside from scars and his leg being a little thinner, you would never know what Ty has been through. 

“He’s playing competitive soccer. He loves soccer,” Murray said.  “Ty is fast. He just has a way of how he plays.

Ty, the soccer player!

Murray is optimistic about the bettering of survival rates for kids with neuroblastoma, though she knows there really is no rhyme or reason for why certain kids respond to treatment and not others. She hopes for treatments to become less toxic.

Looking back on her experience, Murray emphasized for parents in the same position to ask for help (from friends, family members, your assigned social worker, families with the same experience) and to take lots of notes. And if you’re close with a parent in such a position, Murray explained that distractions are OK (like joking around) and to not ask “what can I do for you?”, but rather “just do it” (example: “Hey, I’m going to bring you dinner when you come home from the hospital tonight.”)

“You would never think it’s going to happen to you and then you’re there… It’s surreal to me.” Murray said. “It’s like a lifetime ago, but it’s always there.”

To learn more or donate to Unravel Pediatric Cancer, which gives unrestricted funds to researchers, you can donate here.

Haley Bosselmanhttps://haleybosselman.wordpress.com/
Haley Bosselman is the former editor-in-chief of Culturas. She holds degrees in journalism from Arizona State University and the University of Southern California. Based in Los Angeles, she writes about arts, entertainment and culture.
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