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Childhood cancer: Inlet girl measures leukemia’s impact bead after bead

By Roger Greene
Coastal Observer

The beads on her necklaces tell the story of 7-year-old Lily Johnson’s life. Yellows represent hospital stays. Whites are for chemotherapy sessions. Greens tabulate the tests and x-rays she undergoes. Reds count the blood transfusions.

There are, of course, other colors on each necklace. More details to what has become the new normal since last December when Lily was diagnosed with acute lymphoblastic leukemia.

“Cancer wasn’t even in my mind,” said Jennifer Johnson, Lily’s mom. “You never think it’s going to be one of your kids. You never think it’s going to be your family.”

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Lily’s mother has been honest with her about the disease and the toll it can exact. Still, Lily is only 7, and her true grasp of the situation must be weighed against the innocence and outlook of someone so young.

Her hair is close-cropped, her back scarred from the surgery where part of her right lung was removed. She has spent birthdays in the hospital and is used to stares from strangers when she sometimes has to wear a mask in public.

Like many her age she is somewhat wary around strangers. She tries to cover for this by making jokes with her sister, Maggie, who is 9. Jennifer says her daughter comes out of her shell easily when she is around familiar faces though.

“She’s handled it pretty well,” Jennifer said. “Probably better than I could have. She gets frustrated because she can’t go to school or do everything she wants. But she keeps going.”

“I will beat cancer,” Lilly said shyly.

Lily is one of the 40,000 children each year who undergo treatment for cancer. More than 40 children are diagnosed with the disease every day and only a small portion of the funds for cancer research – believed to be in excess of $5 billion – are earmarked for children’s causes.

Those sobering numbers are one of the reasons Jennifer is making her daughter’s story known, highlighting the fact that September is Childhood Cancer Awareness Month. Harking back to her career in advertising sales, she has also organized “Lilypalooza,” an all-day concert and cookout.

The Sunday event will benefit Lily and other children battling cancer, and a portion of the proceeds will also go toward CureSearch, a non-profit organization whose mission is to fight childhood cancer.

“They say childhood cancer is rare, but the statistics don’t support that,” Jennifer said. “And I know of several other children in our area who are battling it. We’re trying to do what we can to raise awareness.”

Jennifer believes one of the many evils of the disease is the suddenness of diagnosis.

“When she first got sick there were thoughts it could be a bacterial infection or an ear infection,” Jennifer said. “After a time, I knew it was something else. She had no color and she was so tired and achy that she couldn’t do anything.

“But nothing prepares you to hear that your child has cancer.”

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While dealing with the initial shock, Jennifer began educating herself and Lily about the disease. And real-life experience forced them to confront the issue that fighting the cancer was just part of the battle.

Because her immune system is so compromised, Lily can face serious consequences from illnesses that are routine for most people. She has also dealt with lung infections and pancreatitis.

“The doctor didn’t want to do the surgery on her lung,” Jennifer said. “He had never done it on a cancer patient before. He wasn’t sure it would even be possible.

“He said that if he was back in 30 minutes, it wouldn’t work and he didn’t know what we’d do. He came back three and a half hours later and told me he got it. I just hugged him and started crying.”

Along with the medical side effects, come the personal ones. Jennifer had to give up her job to ensure Lily has full-time care. She has to shop at odd hours to limit Lily’s exposure in public and Lily has been unable to attend school. Maggie, as well as Lily’s 3-year-old brother, Brasher, don’t always understand why some of their normal family activities have been curtailed.

However, the good news is that a degree of light is beginning to overtake some of the darkness.

By December, Lily is expected to begin the transition from the more intensive treatment phase to one that is more maintenance-oriented. There is hope she’ll be able to return to St. James Elementary, where she will be a second-grader, after the Christmas break.

“We’re praying for it,” Jennifer said.

“I want to go back to school,” Lily said.

If you go

What: Lillypalooza benefit for childhood cancer patients

When: Sunday, 1-8 p.m.

Where: Beaver Bar, Business 17

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