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Taylor's fight: 4-year-old battles cancer with the help of Perham community

Taylor Johnson covers her cheeks from the wind during a walk last Saturday. Johnson was diagnosed with Acute Lymphocytic Leukemia the most treatable form of the disease, but she still faces up to two years of treatment. (Carter Jones/ FOCUS) 1 / 5
Taylor's grandma, Bonnie Johnson, adjusts Taylor's hat during a walk last Saturday. (Carter Jones/ FOCUS) 2 / 5
Taylor Johnson poses for a portrait during a walk last Saturday. Johnson was diagnosed with Acute Lymphocytic Leukemia the most treatable form of the disease. (Carter Jones/ FOCUS) 3 / 5
Taylor Johnson runs down the street during a walk with her grandma. Taylor's family is excited to see her energy level back after being on steroids for a month. (Carter Jones/ FOCUS) 4 / 5
Taylor Johnson poses for a portrait with rubber bracelets that read "Taylor's Hope Team / End Childhood Leukemia." Johnson was diagnosed with Acute Lymphocytic Leukemia in January. (Carter Jones/ FOCUS) 5 / 5

Taylor Johnson is like any 4-year-old. She plays with dinosaur toys, loves her dog and annoys her older sisters. But unlike any other 4-year-old, Johnson has the whole town of Perham rooting for her.

On Jan. 25 Taylor was diagnosed with Acute Lymphocytic Leukemia, the most treatable form of the cancer. Now after only nine weeks, Taylor's prognosis is good as she enters a maintenance phase of treatment.

It all started when Taylor woke up in the middle of the night complaining of ear pain. After a routine appointment, the doctor found nothing wrong with her ear, but ordered a blood test after feeling Taylor's spleen was abnormally enlarged.

Taylor's mom, Tricia, said it was a total shock when the doctor came back and said, "I don't mean to scare you, I'm sending you to Fargo right now."

At the time, Taylor's blood levels were dangerously low. Even falling off of a chair could've started internal bleeding.

Taylor's grandma, Bonnie Johnson, said she was shocked, just like everyone else, when she heard Taylor's diagnosis. Since that initial phase, Bonnie said the family has learned how to be nimble, often dropping everything if Taylor developed a fever and needed to go to the hospital.

After a month of shuttling to and from Fargo, as well as being prescribed steroids, Taylor is slowly resembling her old self.

"The first month was bad. Her activity was non-existent, she went from the couch to the bed," said Taylor's dad, Matt. "Once she got off steroids, her energy is definitely coming back. The biggest challenge we face right now is trying not to go stir crazy, because she can't be around people."

Taylor's weakened immune system has her mostly isolated from the outside world while she undergoes chemotherapy.

"She can't go to daycare, she can't go to preschool, she can't play with friends, 'I want to go to Pizza Ranch,' Tricia said imitating Taylor. "Can't go to Pizza Ranch, there's too many people."

While Taylor might be frustrated, Bonnie said everyone else is enjoying this particular phase of treatment.

"She's returning to the joyful 4-year-old we've been blessed to know," she said.

Tricia said at first she felt numb and shell shocked by Taylor's diagnosis.

"You hear everything they're saying, you're going to do whatever they say to get her better. After a while it starts to sink in," she said. "That's when it really hits you that she's got a long battle ahead of her. Even though her prognosis is excellent, it's going to take a while to get there."

Taylor is on track with a consolidation phase right now, which lasts up to 6 months. After that, remission treatment can take up to two years.

"All we have to do is miss one cancer cell," Matt said. "They make sure when they feel that she is cured, that they got it."

"It only takes one," Tricia echoed.

Moving forward, the Johnsons are going to wait and see whether Taylor is ready for kindergarten in the fall.

"It's not out of the realm of possibility that she could start this fall," Matt said. "If she needs to be held back a year, in the whole scheme of things, that's not the worst thing."

Tricia said another year of preschool to get into a routine is probably going to be Taylor's best bet.

"I don't want to throw her into every day, all day kindergarten and have her fall behind a little bit, because she's not used to that," Tricia said.

Through the ups and downs, Tricia said they're still like any other family.

"At times I'd say we're closer, at times I'd say stress levels are high," Matt said. "We have days where tempers get a little short."

Tricia said this is most evident in Taylor's relationship with her older sisters, Maddie and Ava.

"When Taylor is feeling stir crazy, she drives her sisters crazy," she said. "Sometimes her sisters want to be over loving, Taylor's like 'Back up the truck, I don't want this love, leave me alone.'"

Matt said it's been a challenge to make sure Maddie and Ava aren't left out.

"Taylor has had an obscene amount of attention over the last nine weeks," he said.

Bonnie said they've tried to maintain as much normalcy as possible for Maddie and Ava in such a disruptive lifestyle.

"We reassured them, there's times you're going to be concerned and sad, but just like before you're going to be mad," Bonnie said.

The Johnsons have also leaned on guidance from families that have reached out with advice after going through the same thing.

"We're still trying to figure out which end is up," Matt said.

"It's comforting, they give you good advice and let you know it will get better," Tricia said.

Taylor's Care Team

The Johnsons said the Perham community's outpouring of support started the day after Taylor's diagnosis.

"The community has been amazing with their fundraising. I can't even explain it, it's just been so overwhelming," Matt said. "I truly couldn't imagine doing this anywhere else."

"People have done it before we knew what we needed," Tricia said. "The support has been unbelievable."

Tricia said she's caught off guard by someone's generosity on a weekly basis while working at Thrifty White Pharmacy.

"I want to go into the backroom and have a little cry," she said of strangers that want to help anyway they can. "All you can do is say thank you so much for your support."

The hardest part, Tricia said, is knowing when somebody doesn't have a lot but are still willing to do anything, including an elderly man who recently gave the Johnsons $10.

"I want her to take this money and I want her to buy whatever she wants," Tricia recalls him saying. "I just want her to feel special for that moment."

"When you work your whole life to try to be sufficient it can be hard sometimes," Matt said.

"We just want people to know how thankful we are," Tricia said. "We really do appreciate everything they've done and continue to do."

While the generosity is appreciated, Matt and Tricia are starting to filter Taylor's steady supply of gifts.

"Being at that age, people want to just give her stuff left and right," Tricia said.

After each procedure, Taylor takes her pick from a toy in a prize room to ensure her experience is fun, not scary. Going forward, Taylor's going to pick stuff for her sisters, or donate to someone else, Matt said.

Helping the family

Everything from preparing meals to providing gas cards and organizing fundraiser events has been handled by Taylor's Hope Team, which is led by Barb Felt and Jessica O'Boyle, Matt's sister.

Felt and O'Boyle are hard at work organizing a fundraiser which will be held Sunday, April 7, from 11 a.m. to 3 p.m. at Prairie Wind Middle School.

The fundraiser will have a carnival theme with 12 different games, 2 bounce houses, snow cones, cotton candy, wacky hair and face painting. A live and silent auction will also feature signed Minnesota Wild memorabilia, guns, grills and experiences like a ride in a helicopter.

"For the circumstances, she's in really good spirits," Felt said. "She's an amazing little girl."

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