TORRINGTON – It started with a fall from a trampoline.

It was early in 2014. Lilly Martin was 4 years old when, as children do, she took a tumble and landed on her right arm. Her parents, Jessica and Jacob Martin, were naturally concerned, but kids take tumbles all the time. She appeared to bounce back, as kids do.

It’s a normal part of growing up. Until it’s not.

“A few weeks later, (the arm) started swelling,” Lilly, now 10-years-old, recalled recently. “I was waking up in the middle of the night, screaming in pain.”

Still, nothing too far out of the ordinary, Jessica said. Then, in March 2014, Jacob’s 5-year-old cousin was diagnosed with bone cancer and, after some online research, her parents realized Lilly’s ongoing symptoms – including swelling, pain and ongoing fatigue – were similar. They took Lilly to an urgent care facility.

“She had a fever,” Jessica said. “We still thought, ‘she’s ok.’ Maybe it’s a sprained wrist.”

Then, the next week, Jessica got a call from Lilly’s day care. She’d woken up from her nap, screaming in pain. Again, the Martin’s took her to the doctor.

“The doctor took one look at her and thought she didn’t look normal,” Jessica said. “The next day, Wednesday, April 30, 2014, I got the call.

“They said they thought she had leukemia.”

That was the real beginning of a family odyssey that’s still playing out today for the Martin family. It’s a journey more than 15,000 families – about 43 per day, on average – in the United States face annually.

‘Everything stopped’

Childhood cancer is the leading cause of death by disease in this country for children younger than 19, according to the Children’s Cancer Research Fund website, childrenscancer.org. September is Childhood Cancer Awareness Month.

“And only 4% of all cancer research money goes to kids,” Jessica said. “But our kiddos lose the most years of life of all the populations diagnosed with cancer.”

Every year, more than 300,000 families around the world get that same news Jessica received on that day in 2014.

“I was in my classroom at Longfellow Elementary in Scottsbluff when I got the call,” Jessica said. “I remember my husband telling me those words – everything kind of stopped.”

A music teacher, Jessica immediately arranged for a substitute to take over her classes and drove home. Her next clear memory is pulling into her driveway and asking herself, “Leukemia? What’s leukemia?

“Then the switch flipped and I was in fight mode,” Jessica said. “We’re going to fight this. But I knew I couldn’t let Lilly know how scared we were.”

Lilly’s big sister, Callie, was in kindergarten at Longfellow. She quickly figured out something was amiss when she got to music class to find a substitute in her mother’s place and when her grandfather was waiting to pick her up at the end of the day.

“I remember sitting in the car, riding home,” Callie said. “Grandpa said to me, ‘Your sister has cancer.’

“After that, everything was completely different.”

Physical, emotional battles

According to the Children’s Cancer Research Fund, though the names of the various forms of the disease can be the same, a cancer diagnosis in a child is different than in an adult. The exact cause of cancers in children is still, largely, unknown. Because of their young, developing bodies, doctors can’t treat the disease in children the same as they do in adults.

And there’s the challenge of explaining to a 4-year-old the battle going on in their tiny body.

“I guess they explained it to me like I had bad guys and good guys in me,” Lilly said. “The bad guys were killing off the good guys, so they gave me medicine. It was supposedly killing the bad guys, but it was killing some of the good guys as well.”

Along with the physical effects, both Lilly and Callie had to deal with the emotional effects of Lilly’s cancer. Lilly and her parents were living in a Ronald McDonald House facility while her treatment began at Rocky Mountain Hospital for Children in Denver. Lilly’s treatment included high doses of steroids, which carries a long list of side effects.

Due to the steroids, Lilly’s relationship with her sister “was terrible. I didn’t know how to control my anger,” she said. “I’d hit her. I didn’t want to play with her.”

“You weren’t your normal self,” Callie said. 

“I remember me always pinching her,” Lilly said.

The ordeal also damaged Callie’s relationship with her mom. Traveling constantly between different homes – “I got sent to Arizona to live with my dad’s family” – definitely took its toll.

“That was really hard for me,” Callie said. “I went to see Lilly, and my mom on weekends, when I could.

“My relationship with my mom was really damaged after Lilly’s cancer.”

The good news is, their relationships are getting back to normal now. But that’s not without quite a bit of therapy and help. Jessica, Callie and Lilly aren’t embarrassed to say they were in therapy for a long time to deal with the unseen scars.

“I’m afraid of hospitals now. All those negative emotions come back,” Callie said. “And now, I have a harder time crying than I used to. It really toughened me up.”

Now, the family is waiting for July 12, 2021 – the date marking five years since Lilly’s last cancer treatment. 

The day they’ll finally be able to say, “she’s cured.”

The future

But that isn’t the end of the story of a diagnosis of childhood cancer. The chemicals used to treat the cancer take a toll on a young person they don’t on an adult with the same illness.

Lilly, for example, developed bone loss from vascular necrosis in one hip due to the side effects of the treatments. Initially, doctors said she’d probably need a hip replacement sometime in the future. But later examinations showed new bone grew in the area and Lilly now plays basketball and is able to run with her classmates.

“That was a tender mercy miracle, but we’ll be following up with cancer doctors for the rest of her life,” Jessica said. “And one of the medications can have negative heart effects.”

Along with their physical development, children diagnosed with cancer regularly suffer problems with their emotional development. Lilly’s cancer treatment lasted from when she was 4-years-old until she was 6-years-old – important years where children typically learn socialization skills and how to make friends, Jessica said.

“While Lilly was in kindergarten, we were all in survival mode,” Jessica said. “She spent most of her time in hospitals with adults. We had to step back and be patient, teach her how to develop friendships with her peers.”

Along with the negative, Lilly’s cancer diagnosis has had some positive effects on the family. They’ve all learned valuable lessons from the experience.

It pushed Jessica, a music teacher at the time of the diagnosis, to reevaluate her priorities. In the short term, her focus went from the music concepts her students were learning to worrying about the students as individuals. She eventually made a career change to become a school counselor.

“I’d tell people to stay strong,” Lilly said. “If you’re staying strong, it’s going to help your journey. You’ll know there’s always going to be people there to help.”

And there’s one more thing the family will take into the future from Lilly’s battle with cancer.

“I had this friend, Delaney Clemants, from Grand Junction, Colo.,” Lilly said. “She passed away. That’s how my little sister Delaney got her name.”