NEWS

Special day of thanks in girl's fight against cancer

Anthony Conchel
Editor

MARION - The handmade sign above the family home’s front entrance tells the story.

Lexi blows out the candles on her cake at her fifth birthday party.

After a grueling 287-day battle with Ewing’s sarcoma, a form of bone cancer, Alexes “Lexi” Edens has beaten cancer.

“On Oct. 16 Lexi was declared cancer free. She rang the end of chemo bell the next day, and she finished her treatment Oct. 18,” said her mother, Kristin. “It was a very emotional three days.”

They celebrated in the hospital by getting pizza and having a visit from extended family.

Today will be a special day of thanks for the 5-year-old; Kristin; Lexi's father, Robert; and her little sister, Adalynn.

Time for family

“We finally get to see family. So far (during Lexi’s 10 months with cancer), it’s been only grandparents and us. Now we get to have a dinner with cousins, aunts and uncles,” Robert said.

The Edens plan to enjoy several Thanksgiving meals this week to accommodate various family members.

“It’s a marathon,” Robert said.

Last week, they went to Great Wolf Lodge in Mason and Newport Aquarium in Newport, Kentucky, to celebrate Lexi’s victory.

“We’re going with her friend Maggie, who she met during treatments. Maggie’s from West Virginia and finished her chemo in August. She’s made a lot of new friends,” Kristin said.

The family is grateful to many people.

“We are thankful for the support from our family, the phone calls and texts checking on us and her. The fact that my dad was always there to take sissy so we could be with Lexi at the hospital and not have to worry that sissy was being cared for,” Kristin said.

Little things helped the family cope this year, such as a neighbor mowing their yard and taking their trash to the curb when they were at the hospital.

“We are thankful for my husband’s work, not only for working with him on missing days to care for Lexi, but also for the employees who donated and bought shirts and bracelets. For the overwhelming love and support of the followers on her page, they are always there to lift us up when days seemed dark,” Kristin said.

Keeping track of the struggle

Kristin has a large poster that is part portrait, part scorecard of the past year.

“This is her journey,” she said while holding it; “287 days, 93 days spent in the hospital, 12 blood transfusions, 14 X-rays, 10 days in (the pediatric intensive care unit), two collapsed lungs, six different drugs.”

“It’s been a blur,” Robert said.

He’s managed to keep his job and his focus despite numerous trips to Nationwide Children’s Hospital in Columbus.

“She handled chemo really well.”

Her parents praised the hospital staff.

“It’s their job, but the whole staff was great. They went above and beyond. They would see that worrisome look on our faces and would tell us, ‘Go grab something to eat. We’ll play with her.’ They’d get a puzzle out and give us a little break,” Kristin said.

Resuming a normal life

Life has begun to resemble normalcy again.

“She’s back to seeing a pediatrician. Unless she has a fever that doesn’t break with Tylenol. They will see her every three months for labs and urine tests and scans,” Kristin said.

The 5-year-old’s immune system is still weak.

“She has no restrictions. We went out and had a bonfire because she wasn’t allowed to before,” Robert said.

Lexi, who normally wears Disney Princess outfits, found something different for Halloween.

“I was Zombie Elsa,” she said.

Lexi also looks forward to Christmas, and not just for the presents.

“I like snow. I like everything about Christmas,” she said smiling.

She does somersaults on the living room floor and plays with her sister, putting on bunny ears and watching TV. She shows no signs of the countless hours she spent hooked up to tubes and scans in the hospital.

“She was running all over last weekend. It was nice being outside. For a year, she’s only been here in the house and the hospital,” Robert said. “She said it felt like jail.”

Lexi also went to lunch recently with her “maw-maw who was visiting from Florida” and to the store.

Next fall, she’ll start kindergarten.

The disease

Ewing’s sarcoma — the second most common bone cancer after osteosarcoma — often originates in the long, large bones of the body, including the hip, thigh, shin, chest and arms.

Lexi is missing several ribs after undergoing surgery April 20 to remove a tumor.

The tumor had attached itself to her third front rib and to her right lung. It was 11 centimeters long.

“She was showing good signs, and they kept telling us things were going to be good. … Until you hear the words 'cancer free,' you still worry,” Kristin said.

“She was always in good spirits, but she seems happier now.”

Inspiration to others

Through Facebook and media exposure, Lexi has touched many lives.

“People we have met with cancer say her story has inspired them,” Kristin said.

Kristin made a 7-foot blanket with the names and handprints of people who were part of Lexi’s journey.

“The binding is pillowcases from the hospital. We included everybody you could think of,” she said of the art therapy.

Their goal is to raise awareness of childhood cancer. Toward that end, she wants to organize a campaign.

“We want to try to get Marion to go gold for September. Columbus and Delaware have done it, and Marysville recently joined in,” she said. “It’s not expensive; just get businesses to decorate their windows gold or something. It can be like what’s been done for breast cancer awareness.”

Although the cancer is in remission, the family is aware it could return.

“Five years (cancer free) is what we are looking at. That 10th birthday party will also be a celebration,” Kristin said.

“Right now we are just resuming life as a family without hospital trips.”

aconchel@gannett.com

740-375-5107

Twitter: @anthonyconchel

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