Molly's Kids: 7-year-old Lenoir girl diagnosed with rare cancer

Molly's Kids: 7-year-old Lenoir girl diagnosed with rare cancer
(Credit: Family)
(Credit: Family)
(Credit: Family)

LENOIR, NC (WBTV) - Bus stop, done. Preschooler d ropped off. Sitting with coffee and logged into email, only to find pictures of Johannah Hayes. Maybe you know her. Maybe you're a neighbor of hers in Lenoir. Or, maybe you have a daughter who's 7, and the description of Johannah reminds you of your own little girl.

"She loves dance, mermaids, swimming, camping, gymnastics and happiness," wrote her mom Melissa. "And up until 2018, she was always healthy."

In early January, Melissa said she noticed Johannah's left knee was swollen. She wasn't complaining, but by the end of the month was limping. They got it checked out at Brenner Children's Hospital. An orthopedic doctor told Melissa – while Jo was there – it wasn't fluid on her knee; it was a tumor-like mass.

Jo piped up and asked if that meant she had cancer.

That's where Melissa's email stopped me. Thinking about your 7-year-old looking at X-rays of her own knee, and calmly asking, "Do I have cancer?"

"I tried my best to keep my composure," Melissa said. "The doctor just said we had yet to find out."

An MRI, echocardiogram, and biopsy showed a clear answer:

Yes. Jo had cancer. Metastatic Ewing Sarcoma.

From experience with other #MollysKids, I know Ewing is a rare form of pediatric cancer making up 1% of all childhood cancers. Each year over 200 children/teenagers in the US are diagnosed with this type. The 5-year survival rate is 15%-30%.

Test results indicated Ewing's in Jo's left leg started above the knee, and headed up the leg towards her hip. It was in her bone marrow, tail bone, lungs and right arm below the shoulder.

"It was all we could do not to lose it," Melissa said. "Two weeks before we thought we had a healthy girl. We had no warning, our baby had cancer in multiple places."

Melissa and her husband Shawn chose to try a new clinical trial, which meant letting the trial use Jo's tissue for research. It'll hopefully put her in remission and – if it works – help kids in the future. Johannah is currently on six different types of chemo. Radiation is pending; the next step will be a surgery to replace her full femur bone in her left leg.

"We include Jo in every conversation," Melissa said. "She's now a child trapped with adult-decisions. It's her body. We feel she should be able to ask questions and have a form of ownership."

Through it all, Melissa said Jo hasn't lost her sass. That she leaves a little sparkle everywhere. Like, when it came to her wig. She hated it at first, but was worried what people would think if she didn't wear it. Now she's embracing baldness.

"We went from collecting bows, to hats," Melissa said. "Her happiness in the face of all these big obstacles has a unique effect on all of us. Focusing on anger, frustration and sadness becomes a waste of time we've learned we can spend enjoying the positives."

One of those positives has been Collettsville School, a K-8th program that Jo loves. Melissa says Principal Craig Styron has stepped up in every way possible, and then more.

"I appreciate our community far more than I can express," Melissa wrote. "Having a child with cancer changes your whole world. The school and our friends are holding our hands. We can never be grateful enough. I've always loved following #MollysKids and done what I can to help create ACTION. But I never imagined I'd be contacting you about my child. Please let people know this is all very real."

**Editor's note: This is about one of #MollysKids, children WBTV Anchor Molly Gr antham follows closely on her Facebook page. It was first published there, which is why it's written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.

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