Last November 6-year-old Lily Johnson started feeling sick. After about a month of being told it was everything from a bacterial infection to an ear infection her mother, Jennifer Johnson, was more than concerned.
“I took her to the doctor and said something had to be wrong. She looked like death,” Johnson said. “He ran some blood work and said he didn’t know what was wrong but we needed to see [a specialist].”
It was after seeing that specialist that Johnson learned her daughter had acute lymphoblastic leukemia – and their lives changed.
Lily joined the more than 40,000 children undergoing treatment for cancer each year in the United States. Despite the numbers, research funding for childhood cancers makes up a small fraction of the billions of dollars dedicated to cancer overall. That’s an unacceptable situation in Johnson’s book, and she’s hoping to change that by holding a fundraiser of her own next week, during this Childhood Cancer Awareness Month.
It’s been a long road to get to this point. After Lily’s diagnosis, she and her mother started making weekly trips to the Medical University of South Carolina in Charleston. “A lot of times we had to stay for weeks at a time, like when she had a lung infection or when the [chemotherapy] gave her pancreatitis,” Johnson said.
Lily’s been home from St. James Elementary since she was diagnosed last December, and Johnson said she hopes her daughter will be able to join her second-grade class after the Christmas holiday.
“I will be going back,” Lily said.
A few months earlier, another Murrells Inlet child was diagnosed with cancer.
Shelbie McCracken, 14, was preparing to try out for the cheerleading team at St. James Middle School in June 2011 when her mother saw Shelbie was having trouble using her arm.
She’d had pain “off and on for about a month before the tryouts,” said Lauren Sutton, Shelbie’s mother. “I took her right to the doctor after that.”
After a week of tests and biopsies, Shelbie was diagnosed with osteosarcoma, bone cancer, and began chemotherapy treatments five days later.
She was homeschooled for all of her eighth grade year, receiving treatments for two weeks at a time through May.
“That was the only thing she complained about. She didn’t complaining about being sick … she just missed her friends,” Sutton said. “She’s tougher than any of us and she made it easier for us, if that’s even possible.”
Shelbie was able to rejoin her friends at St. James High School at the beginning of her freshman year and said she is happy to be back in school.
Shelbie received a donor bone for what her doctor called a “limb salvage surgery” that was placed in her arm, Sutton said. But she said the doctors told her the use of her arm would probably have never been the same.
“Years ago they would have amputated at the shoulder,” Sutton said.
Raising awareness, and money, for childhood cancer research
Every day, 36 children are diagnosed with cancer, and both families said they are shocked by the limited funding dedicated to childhood cancer research. They said they hope to spread awareness, especially this month.
Of $5.05 billion in federal funding for cancer research, only about 4 percent is dedicated to studying the various childhood cancers each year, according to the National Cancer Institute.
“As a mother, that’s why it’s important,” McCracken said. “I know that childhood cancer does not get enough government funding. That bothers me, especially now that I’ve had a child affected.”
Johnson will host Lilypalooza on Sept. 23 to benefit her daughter and other local families who have children with cancer. The music festival and cookout will take place from 1 to 8 p.m. at Beaver Bar, 3381 U.S. 17 Business in Murrells Inlet.
“Half of the proceeds will go to CureSearch, which is a national children’s [nonprofit] dealing with cancer,” Johnson said, adding that a portion of the money raised will be given to Shelbie and her family.
Dealing with having cancer
Both mothers said their daughters have dealt with the diagnoses better than they have.
“I’m a strong person, but I was reduced to my knees that day,” Sutton said of the day Shelbie was diagnosed.
Shelbie said she dealt with the news as best she could.
“At first it was hard, but I learned to just live with it, I guess,” she said.
It’s different for Lily, who is only 7, Johnson said. She said she’s been honest with Lily, telling her that cancer can kill people and that she has a kind of cancer that children get.
“But I think kids’ long-term memories aren’t as good as their short-term memories,” she said. “I’m not sure she remembers what it was like before. It’s her new normal because the past nine months have been consumed by it.”
On Thursday Shelbie was informed that her most recent scans revealed that she could get the central line implanted in her chest with ports for her chemotherapy removed in the next few weeks.
“We’re celebrating today,” Sutton said.