'Look at how she walked through the fire'

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MFL MarMac junior Lexy Johnson was the featured speaker at the school’s annual cancer awareness assembly on Jan. 31. She, along with parents Ryan and Becky, spoke about her benign brain tumor diagnosis and recovery. (Photos by Audrey Posten)

Many MFL MarMac students showed their support for Lexy by wearing special brain tumor awareness shirts. Lexy is pictured front, center, with parents Becky and Ryan.

Keagan Smerud, a member of the MFL MarMac High School Student Council, which organizes the cancer awareness assembly each year, kicked off the event. “Contributing your support is greatly appreciated, and does not go unnoticed,” by those battling cancer, he said. “But your support doesn’t always have to come in the form of money. It can be spread through the giving of your resources and your time, such as lending an ear to listen or a hand to help.”

Over the past week, third graders held a fundraiser for MFL MarMac Friends Helping Friends. As of Friday morning’s assembly, they announced that nearly $3,400 had been raised.

Following the assembly, high school students like Ashley Weaver each tied a ribbon on their lockers. The ribbon color signified the type of cancer the student wanted to raise awareness for. Some students attached names to the ribbons, honoring friends or family member who have battled cancer.

Members of the MFL MarMac choir shared a touching performance during the Jan. 31 assembly.

At event, Johnson reflects on brain tumor diagnosis, recovery

By Audrey Posten, North Iowa Times

Lexy Johnson’s favorite quote is “Positive thinking, positive outcome.” That sentiment was put to the ultimate test over the summer, when the MFL MarMac junior was diagnosed with a benign brain tumor.

“I was reminded that you should be thankful for all your blessings because life changes instantly,” said Lexy, who with parents Ryan and Becky, shared her story with fellow students and staff at the school’s annual cancer awareness assembly on Jan. 31.

Lexy had suffered from headaches as long as she could remember—even as far back as elementary school. But it was midway through her sophomore year of high school when she began to really take notice.

“I was playing club volleyball at the time, and it seemed I was having a headache almost every practice or tournament,” she recalled. 

The headaches were often paired with vision changes, prompting Lexy to consult an optometrist.  The eye doctor suggested reading glasses, but yet, just a few weeks in, the regular headaches and vision changes persisted. So Lexy turned to the chiropractor for relief. By then, it was summer, and she was serving as a lifeguard at the Monona Family Aquatic Center.

Still, the headaches came daily—some days worse than others. She also became nauseous and sick. 

After a particularly grueling four-day stretch, Ryan and Becky took Lexy to the family doctor, suspecting dehydration. The prognosis was a virus that needed to run its course. Two days later, emergency room staff said the same.

The illness never ran its course, though. Instead, it got worse.

“Every day I would wake up with a bad headache, and alternated between ibuprofen and Tylenol, in the hopes it would let me enjoy my summer. I was trying to participate in volleyball league, dance camp, boating on the river, staying at the cabin at Harpers Ferry, lifeguarding and watching baseball,” Lexy said. “I was throwing up in garbage baskets between swimming lessons and volleyball camps because I was constantly nauseated.”

During volleyball league, Lexy began to feel dizzy. She was seeing double and couldn’t connect with the ball. 

At this point, Ryan and Becky had become increasingly concerned. 

“We had noticed a change in her over the summer. She just wasn’t the same. She was irritable, withdrawn, and we missed our Lexy,” Ryan said. “Everyone’s frustrations were high. We’d seen an eye doctor, two regular doctors, a chiropractor, and we’d taken her to the ER several times—still no answers.”

Finally, a pediatrician suggested an MRI. But since it wasn’t deemed an emergency situation, authorization from the insurance company was needed. So the family waited. 

Lexy went about her life, and prepared to perform with the dance team on the Friday night of Elkader’s Sweet Corn Days celebration. Suffering from a headache, she planned to push through the routine with a dose of ibuprofen. 

“But things were different this time,” she explained. “I started to go numb in my right leg.”

Soon, the numbness spread to her right arm. She lost vision in her right eye. She struggled to walk. 

“I was so frustrated that I couldn’t just snap out of it,” Lexy said. “I tried to apologize to my team, but no words came out.”

Ryan and Becky rushed Lexy to the emergency room, where she couldn’t to respond to simple questions.

“What was coming out of her mouth was either gibberish or answers that didn’t make sense. For example, when they asked her what her birth date was, she answered with the pass code to her phone,” noted Becky. 

Lexy became agitated, crying out and moaning and moving around on the bed, clearly in pain. She had to be sedated so staff could complete a CT scan and capture an image of her brain. That’s when the family’s worst fears were confirmed: Lexy had a mass on her brain.

She was immediately medflighted to the University of Iowa Hospital, where a neurosurgeon had agreed to take her case.

“We said goodbye to Lexy, not knowing what to expect when we got to Iowa City,” said Becky. “We didn’t know if she would ever be able to talk normal again. We didn’t know if she had cancer. We didn’t even know if Lexy knew what was going on.”

When the couple arrived, they were pleasantly surprised to find Lexy smiling and talking following successful surgery to relieve hydrocephalus—fluid build up caused by the brain tumor on the back of her head. 

“It’s common in patients with a brain tumor because the tumor grows so large that it causes a blockage of spinal fluid,” Lexy said. “[The neurosurgeon] told me I needed to have emergency surgery where they would put a tube in my head to regulate the fluid.”

Two days later, it was time for another surgery: a craniotomy, or brain surgery, to remove the tumor itself. Once removed, the tumor could then be biopsied.

“For the first time,” admitted Lexy, “I was feeling nervous and struggled to stay positive. But I knew I wasn’t in it alone.”

Over the 10-hour surgery, Ryan said he struggled to remain positive too.

“For the last three days, our lives had been put on hold, and we still didn’t know if the brain tumor was cancer or not. We had no idea what the outcome would be,” he shared.

He and Becky found strength through Lexy. 

“We had to see this through Lexy’s eyes,” he said. “She’s a fighter. She took this in stride. Her positive attitude was amazing considering what she’d been through the past six months.”

The surgery was successful, and the tumor was fully removed. It was seven centimeters in size, comparable to a peach.

“In her case, her tumor was so large her brain was no longer able to tolerate it, which was causing her life threatening symptoms,” said Becky.

A biopsy revealed it was a slow growing benign tumor—there was no cancer. Lexy was able to share the news with a room full of visitors.

“We all celebrated as tears of joy streamed down our faces,” she detailed.

Lexy started physical therapy just a day after surgery. A naturally independent and active person, she said the recovery process was frustrating. 

“But by the second day of physical therapy, I was able to take a partial lap around the PICU,” she shared. “It wasn’t fast, and I needed help, but it was so exciting because, as someone who’s always moving or doing sports, it wasn’t fun just to lay down.”

Lexy spent 11 total days in the hospital, and had no complications from surgery. Even though the tumor was cancer free and fully removed, there’s still a chance it could return, so she will have to follow up regularly with doctors. Now six months later, her latest visit showed no indication of reoccurrence.

During that span, Lexy has reflected often on her brain tumor diagnosis and recovery.

“I’ve learned that what doesn’t kill you makes you stronger. I’ve learned that life changes instantly, and that I’m not taking life for granted. The life you have today is not promised tomorrow,” she stated. “I’ve learned to love my scars and the little baby hairs that are slowly growing back where they shaved my head for surgery.”

Lexy said the biggest thing she’s learned is that it’s OK to be scared. While appreciative that the student school asked her to speak, she and her family were a bit hesitant to share the story.

“Not every cancer story has good news, and just like the day we were told my tumor was not cancer, there was a part of us that felt guilty for sharing our good news because someone else has it worse than me,” she remarked.

Now, Lexy is taking advantage of her good fortune to help others. Two months after surgery, she donated 14 inches of her hair. She’s also spreading positivity, in the hopes of inspiring others. “I want someone to look at me and say, ‘Look at how she walked through the fire. Because of her, I don’t want to give up.’” 

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