Waiting is the hardest part, says Lisa Spivey.
Her son, Blake, was diagnosed with PH+ Leukemia when he was 4 years old. He’s 10 now and cancer-free, but Lisa remembers that feeling of always waiting on something.
Waiting on test results. Waiting to see if Blake’s stem cell transplant was a success. Waiting for good news.
“The waiting is horrendous. It’s the worst feeling,” she said. “Even for blood tests, when they have the results back to you in like five minutes. But in those five minutes, you’re dying. You just want everything to be okay.”
Lisa dealt with her worries by talking with other parents with kids diagnosed with cancer. “It was a great comfort,” she said.
While the kids are going through treatment for cancer, their parents also suffer and worry. They find different ways of coping -- support groups, prayer, journaling and talking with other families.
“I think it’s harder on the parents than it is on the kids,” Lisa said, adding that kids often don’t stress out and worry. Blake was so young when he was diagnosed he didn’t know what cancer was. He liked superheroes, so she explained it as good guys vs. bad guys.
“I said the bad guys had gotten into his body and the chemo was going to go in there and beat them up, and he may just feel sick, but that’s because it’s a battle. And he understood.”
But when he was sick, he didn’t always understand his mother’s fears.
“I would cry and he would tell me to suck it up. Kids take it with more stride than adults. They don’t get how bad it could be.”
Danny Moseley’s son, Daniel, was also young -- just 3 years old -- when he was diagnosed with a form of leukemia. It began with bruises that wouldn’t heal. Daniel went through chemotherapy and also had to take steroids that made him hungry all the time. He would wake up in the middle of the night, asking for food.
“That was tough,” Danny said.
Danny said he and his wife tried to be honest with Daniel from the beginning and explain things to him, but because he was so young, “he couldn’t tell you what he felt or what was wrong.”
All of the medical terms and procedures can be overwhelming to parents, Danny said. Since Daniel’s diagnosis, Danny’s learned how to read a blood count sheet and picked up knowledge of drug names. The staff at Egleston Hospital -- where Daniel was treated -- helped answer any questions Danny and his wife had.
“They understand that the people that go there have no idea what this stuff means. The nurses really talked to us, every day and every week,” he said.
Daniel just turned six and is cancer-free now. He doesn’t remember most of his treatments, except when he sees pictures.
“It’s distant memories to him,” Danny said.
All that remains of James McMinn’s bout with cancer is a scar and pictures taken by his mom, Angela.
James was 7 when he was diagnosed with a medulloblastoma, a type of brain tumor that affects the cerebellum and the spinal cord. He had surgery to remove most of the tumor and also underwent chemo and radiation therapy.
“The doctors gave him a 50 percent chance of living,” Angela said. She remembers days spent in Atlanta for chemotherapy treatments, the frequent blood draws and finger pricks, and giving him shots every night.
“I could probably go for my nursing degree,” she said. “You learn to watch for fevers. I can look at him and tell whether or not he’s sick.”
James is in remission now, but because his tumor can regrow, he will have to be monitored for the rest of his life. He also has autism, but Angela thinks he understands what happened to him. He’s still fragile, she said.
“He’s more emotional now than he was before,” she said.
Angela said she found strength from her faith in God and through talking with other local parents with kids undergoing treatments for cancer. She said she wished there were more support groups for parents like her in Columbus.
“Before it felt like we were alone. Some of the pressure and anxiety was relieve because somebody else was going through it, too,” she said.
Melissa Fussell’s daughter, Isabelle, was diagnosed with a Wilms’ Tumor when she was 2.
“It’s different having a kid with cancer because you have to be so much more the caregiver,” she said. Isabelle went through six months of chemotherapy and 11 radiation treatments. She lost all of her hair -- a head full of dark curls that people would stop and compliment, Melissa said.
“It just comes out in handfuls,” she said. Melissa’s husband, Bruce, took Isabelle to get her head shaved. While Isabelle didn’t mind being bald, it was hard on Melissa.
“I remember having her on the counter and trying to get ready for work and I couldn’t look at her, seeing me with all that hair,” Melissa said. Bruce had shaved his head and he told her to shave hers, too.
“I said, ‘Women don’t just shave their heads.’ And he said. ‘If it will help you, do it.’”
Melissa shaved her head and Isabelle liked it. “She rubbed my head and she rubbed her head and said, ‘Like me.’ I knew then that we were all bald and we’d all be okay.”
Getting in touch with other parents with kids who had cancer has helped, Melissa said. While Isabelle was still undergoing treatments, the family went on a Lighthouse Family Retreat. The seaside resort offers kids with cancer a chance to play at the beach, while parents meet for group therapy. Melissa said they would share tips on getting kids to take medicine and managing a sick child, as well as their own worries.
“It was hard, very emotional,” she said. “You really got to hear what other people were going through.”
Isabelle is 4 now and cancer-free. She doesn’t remember much from her illness and treatments, but Melissa made a scrapbook of pictures from those years.
“We want her to forget what she went through, but not what happened to her. It made us appreciate things. I don’t ever want to forget how lucky we are that she is with us.”