Gibsonburg woman lives, laughs and loves after beating rare cancer

GIBSONBURG - While driving home from a doctor's appointment in Columbus in May 2017, Bo Evarts heard his daughter Lexi make a statement that caused him to hit the brakes.

"I have no shot," Lexi Evarts said.

Lexi had just been told she had a rare form of bone cancer.

Bo's heart dropped, thinking that his daughter, a 2015 Gibsonburg High School graduate, was giving up before her fight began.

"I stopped, I yelled at her," Bo said.

But Lexi wasn't talking about the cancer.

"She was playing a billiards game on her phone — and said she didn't have a shot," Bo said.

That trip from Columbus broke some of the tension as subsequent appointments became easier and led to better news.

Lexi was diagnosed with Ewing's sarcoma, a rare and aggressive form of bone cancer mostly seen in children and adolescents. 

As she prepared for her last exam in May 2017, Lexi was diagnosed.

Started with hip pain

"Leading up to it, I had just had a pain in my hip," Lexi said. "I didn't have any other symptoms, it was literally just the pain in my hip."

But a trip to a chiropractor, pain clinic and physical therapy did not curb the pain.

A day before her last final exam, Lexi found out she had a tumor.

"I went to the pain clinic and they found out there was a tumor. That was on Tuesday. Wednesday I had an exam and Thursday I found out I had cancer," Lexi said.

Being a healthy 20-year-old, Lexi said she felt more confusion than anything after hearing the diagnosis.

"It was really confusing, especially at my age," Lexi said. "I wasn't really sure what was going on, or what I would have to do or how bad it was."

"After I found about what stage it was at and what they could and couldn't do for me, it was more scary for me at that point," Lexi said.

Not only did Lexi have a tumor in her pelvis, but the cancer had spread to her lungs, making her diagnosis even more serious.

Because of her diagnosis, Lexi would have to leave college, something that crushed her.

Ewing's sarcoma makes up about 1 percent of all childhood cancers. About 225 children and adolescents are diagnosed with the disease each year, according to Johns Hopkins research.

In rare company

Each year, between 200 to 250 children are diagnosed with the disease, about three per one million children.

Dr. Jamie Dargart, a pediatric hematologist oncologist at ProMedica Toledo Children’s Hospital, said Ewing's sarcoma can be terminal for most patients.

"Treatment is usually intense," Dargart said. "Chemo can increase the risk of infection and force many blood transfusions."

The only symptom Lexi had was the pain in her hip, and Lexi and her family sought answers to why she was in so much pain.

The answers were not good, as she was diagnosed with cancer, first by one doctor, and then by a second.

Pelvic tumors present challenges, Dargart said.

"Typically, you will have surgery if you have Ewing's, but tumors on the pelvis can be very difficult to remove," Dargart said. "You can have a lot complications from it, because the leg attaches to the pelvis. You can have a lot of pain from surgery or difficulty walking."

Bo remembers hearing the words Lexi had cancer, but remembers the support from his friends, family and co-workers in the Rossford school district where he teaches math.

"The doctor was blunt," Bo said. "That was the hardest for me."

Dargart said survival rates are not high for patients diagnosed with Ewing's sarcoma.

"We look at it from long-term outlooks of five years," Dargart said.

Dargart said there are new developments in treatment coming for Ewing's patients, including antibody-based therapies that target proteins on the tumor, and vaccines from tumor cells that can be used after someone has been diagnosed.

Staying positive 

But Lexi remained positive throughout the process, knowing that putting on a brave face would help her and her friends and family better cope with the situation. 

Stepmother Jamie Evarts said Lexi's attitude hashelped her and Bo stay strong.

"She made it easy for us," Jamie said. "Her positivity was something that just helped in every step of this."

Lexi was not alone in her fight. She said she remembers how hard it was to tell friends and family about her diagnosis.

She embarked on a journey that would test her limits, undergoing more than 40 rounds of chemotherapy and radiation treatment in seven months.

.But Lexi never lost her smile, positive attitude or outlook that she would beat this disease.

Lexi has not only fought and beat her diagnosis, but she also had fun at her cancer's expense.

After losing her hair, Lexi dressed as Charlie Brown for Halloween last year. She never let her disease bring her down.

"I remember, you had chemo that day," Bo said to Lexi. 

Bo remembers it was a Saturday and scheduled to be an eight-hour treatment day. But when Lexi's oncology team saw her dressed as the bald-headed cartoon character Charlie Brown, it made them laugh.

"It made their day," Bo said. "Just that attitude, was another moment."

"It was perfect," Jamie said.

Feeling the love

The hardest part of Lexi's diagnosis was having to tell friends and family, and not being able to go back to school for the fall semester in 2017.

Lexi also missed the 2018 spring semester as she was finalizing her treatment.

"I had to miss the whole year of school, because my chemo treatments in November hit me really hard," she said. 

Lexi remembers getting her diagnosis as she was ending her sophomore year at Bowling Green State University. 

"It was the hardest to tell my friends and family, and I think there were like five or six people I had to text, so they didn't find out over social media," Lexi said. "That was really hard on me. That was one of the harder moments because I had to tell people who are going to be affected by it so much."

She does remember telling everyone that it was going to be OK and that she would beat this disease.

But Lexi made it through and her boyfriend, Jay Conner, a BGSU student from Woodville, stood by her because the two were not only dating, but are best friends.

Lexi and Conner began dating six months before her diagnosis. Telling him was one of the hardest things she had to do.

"I couldn't be sad," Conner said. "It was hard to see how much chemo was taking over her, but one of the best days of my life is I have video of her getting her last chemo treatment."

Lexi said she tries not to search for information about her disease online, but is aware of the risk that Ewing's sarcoma could come back.

"The five-year checkup is a big deal," Lexi said. "Right now, I get three month and six-month checkups."

Bo said Gibsonburg came together to support Lexi, raising more than $10,000 at a June 11, 2017 benefit at the Hungry Bear Diner. 

"The support we had from our family and friends in Gibsonburg and Fremont and Rossford where I teach was kind of overwhelming," Bo said. "But it made it so much more manageable."

"So many people came out and supported and came to see me, and that was amazing," Lexi said. 

Coping with cancer

"Crazy enough, my neighbor (Renee Graser) that lived across the street a few years ago also had the same type of cancer," Lexi said. "I looked up to her and what she did, because she is in remission."

Because of that bond, Lexi believes she too could win her fight.

After seeing doctor's at Nationwide Hospital in Columbus and Cleveland Clinic, Lexi, like her neighbor, sought treatment at the University of Michigan Hospital.

"The first doctor we went to was more scary," Lexi recalls. "He was like, 'We've got to start right away and get this treated, and we can't waste any time,' and that was really scary."

The second doctor she saw was more calm, but still wanted to start treatments immediately.

Looking for reassurance, Lexi found it at the University of Michigan where her doctor said, "You'll be fine."

That put Lexi at ease about the whirlwind news she was receiving.

Treatment takes toll

Lexi's cancer was treated aggressively with chemotherapy and hip radiation.

"I had six weeks of hip radiation and then two weeks of lung radiation," Evarts said.

Lexi said she had heard the horror stories of cancer treatments and how they can impact a person's everyday life.

"At first, the treatments weren't as terrible as I was anticipating ... for some reason I was lucky enough, I never threw up, I never got nauseous, and the only thing I was, was very tired."

As treatment continued, Lexi began to feel the effects of chemo and radiation.

"Ever since the beginning I've been very positive with everything, and I've always thought that a positive mindset was the only way I was going to get through it," she said.

But five days a week for eight-hour days every other week took its toll on Lexi.

"It was a very taxing and exhausting schedule," Lexi said. "But the whole time I knew the only way to be able to maintain how well I was feeling and well, my sanity, was to stay positive about everything and let everyone else see that I was positive about everything even though it looked very bad."

Putting on a happy face was not always easy, as treatments ravaged her body. 

"There was a point where I was in the hospital for pneumonia for five days in August and that was really tough," Lexi said. "That was one of the lower points. As much as I was trying to stay positive, I was so tired and so ready to be normal again, and I had so much left, that was just the beginning."

But she continued to fight, leaning on her positive attitude and support system.

Feeling normal again

Each day Lexi worked towards beating her disease.

After chemo treatments ended in January and radiation in February, Lexi was told in April — after 341 days of fighting cancer — that she was in remission.

"I was really, really ecstatic," Lexi said of remission. "I was mostly really happy to go back to school. I really missed the atmosphere of school and being with my friends and having a schedule of things to do, as crazy as that sounds — once you have nothing to do for months on end, you start to want to do everything." 

Lexi said she was happy to "feel normal" again after cancer and treatments took a toll on her.

Looking ahead, Lexi will continue having checkups for her lungs and MRI's to make sure she is cancer-free.

"I really am trying to maintain a healthy-ish lifestyle," she said.

The odds of her cancer coming back are about 50 percent, Lexi said. But she does not let that get her down, having beat the cancer once.

Because surgery is not an option, Lexi said she will focus on what she can control: being happy, healthy and living life.

"I go three months at a time, and I'm like, for the next three months I'm clear. The day or two before my appointment, I get a little nervous."

In May 2020, Lexi will graduate from BGSU with a degree in speech pathology, but after her battle with cancer, she said she is interested in working in occupational therapy.

"If I look into that, I can work with people and kids who have cancer," Lexi said. 

Being thankful

The battle has taught Lexi to be thankful for everything she has, and to never take anything for granted.

Although she was sick last year, Lexi played in the family’s annual football game at the house.

Although she was undergoing chemo and radiation treatments at the time, Lexi was able to score the winning touchdown.

This year she will play again, with an eye on scoring, but her most anticipated activity this Thanksgiving will be eating mashed potatoes with her family.

The clichés are true, Lexi said. After getting diagnosed, she decided to live the best life she could, and not take anything for granted.

She decided to create a bucket list, knowing her diagnosis was grim. 

Lexi's bucket list on One Life, One List — a 501(c)(3) created to help people achieve their dreams — includes 36 items ranging from meeting Selena Gomez to visiting a children's hospital. 

She's swam with dolphins, hugged a redwood tree and met Shane & Ryan from Buzzfeed Unsolved, a show about unsolved mysteries, haunted places and demonic possession.

As she continues crossing items off her bucket list, Lexi said her Thanksgiving bucket list item is to play another football game with the family and eat mashed potatoes. 

"Being cheesy, I'm so thankful that I'm here to be able to have another Thanksgiving, because Thanksgiving is my favorite holiday," Evarts said. "Mashed potatoes are my favorite food and I'm so excited to be able to eat all the mashed potatoes I want."

cshoup@gannett.com

419-334-1035

Twitter: @CraigShoupNH