Meet Josie

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Editor's note: Josie's difficult journey ended when she passed away from her disease on October 22, 2017.

 

She knew that life was precious, fighting hard as long as she could, filling every day with life until the very end. Her father, Jerome, said, "She was my miracle from the moment I laid eyes on her. I was always blessed being around her and she always had such a sweet spirit about her. Never in a million years would I guess that she would touch so many people."

 

Here is a glimpse of Josie's journey, from October 2016:

 

 

When their 8-year-old daughter was diagnosed with a rare type of cancer, the Perea family began wearing a path back and forth between their home in Reedsburg, Wisconsin, to American Family Children's Hospital in Madison.

 

As they logged countless miles, the Pereas found some fuel – and a friendly face – in the hospital lobby at the Farmers' Market Café.

 

Or, as cook Dan O'Kane puts it: "It all started over muffins."

 

8-year-old Josie Perea prepares for her last of 20 radiation treatments for neuroblastoma

On one of those many trips, for one of Josie Perea's many cancer treatments, Dan noticed that Josie wasn't feeling very well. He asked Josie and her mom, Jessica, if he could make them a special sandwich: roast beef and cheese.

 

And, for good measure, a muffin was thrown into the special order.

 

"Ten minutes later, Josie came back. 'Thanks for the muffin, mister!'" Dan recalls. "We've been friends ever since."

 

In the exhausting weeks and months to come, as Dan served the Pereas more muffins, oatmeal, coffee and sandwiches, Dan and Josie quickly discovered their shared love of hunting and fishing. Soon enough, the two were swapping fishing tales from Lake Virginia and Devil's Lake excursions, and "Uncle D" began imparting angling wisdom to his fishing protégé, nicknamed "Tiny Dancer."

 

Over the spring and summer, Josie was scheduled for two back-to-back bone marrow treatments. That meant the young fisherwoman would need to miss a "Fishing for Josie" benefit, organized by Perea family supporters at a campground in Baraboo.

 

"That just broke my heart. These kids – they just go through so much," Dan recalls. "But still, she was smiling."

 

A Mother's Intuition

 

That smile has made regular appearances throughout Josie's treatment, in spite of its aggressive nature – tailored to match the invader that overtook her body just a year ago.

 

Last fall, Josie started having stomach pain so intense that she stopped eating. She had lost 8 pounds from her small frame. Doctors thought it was a gastrointestinal problem, but her mother just knew something more was going on.

 

"Her whole abdomen was just full," Jessica said, describing what local doctors found on the ultrasound her mother's intuition had insisted on. "It was pushing her heart to the side. It was pushing her esophagus to the side. All of her organs were everywhere."

 

Immediately, the Pereas were sent to American Family Children's Hospital, where Josie's rare cancer was given a name. It was the first time Jessica had ever heard the word "neuroblastoma."

 

High-risk stage 4 neuroblastoma, to be exact.

 

"I'm like, 'It's what?'" Jessica recalls. "And they told me, 'Don't worry. You'll learn it.'"

 

And learn it they did. Josie dove into chemotherapy treatment right away. Then she endured a 17-hour surgery, followed by the tandem bone marrow transplants just weeks apart. Then came the month of radiation treatments.

 

And soon, to target the cancer that remains, Josie will also begin immunotherapy treatment.

 

Josie and her mother, Jessica, read the card given to Josie on her last day of radiation treatment by Dan O'Kane, a cook in the Farmers' Market Cafe

'It takes everything away'

 

From Dan O'Kane's vantage point in the Farmers' Market Café, watching Josie and her family take on cancer has been nothing short of inspirational. Having himself had four knee replacement surgeries since 2009, Dan is no stranger to pain.

 

"I'm hurting every day, but when I see Josie and all these kids… it takes everything away," Dan says. "It's very therapeutic, seeing what these kids do, and what their parents do. It gives me a really good feeling."

 

That good feeling is mutual, Jessica says. Whether it's Dan downstairs in the café or Josie's nurses up on P4 in the cancer inpatient unit, the relationships Josie has formed at American Family Children's Hospital have meant a great deal to the Perea family.

 

It's those bonds, Jessica says, that have helped Josie remain "zesty" in her fight.

 

"She's not ever worried. Not ever worried," Jessica emphasizes. "She has it in her mind that she is just going to get through this and fight cancer. That's all she knows."

 

"We're just fighting cancer. And so she just keeps taking the next step. We have to do this next thing, to fight cancer and make sure it's gone."

 

A Little Fun During the Fight

 

And that's definitely a hard fight – especially when Josie's chemotherapy gives her intense nausea, or she's isolated in the back hall of the pediatric cancer unit during her bone marrow transplants.

 

But on brighter days, that signature Josie Perea zest kicks in, and she's issuing "tickets" to nurses during her hallway patrols, jokingly scolding them for violations. Opening the pad the nurses gave her, Josie would write citations for offenses, ranging from looking at cellphones while working to catching a few minutes of the Olympics at the nurses' station.

 

One nurse paid her ticket by cutting out a picture of herself and plastering it on a fake hundred dollar bill for Josie.

 

"Those nurses are just amazing," Jessica says. "They have such a fun relationship up there."

 

A couple of weeks ago, Jessica saw a picture on Facebook of some of Josie's nurses. She tried to show it to Josie.

 

"She told me, 'Don't show me that. I'll just miss them all too much,'" Jessica recalls. "She just loves, loves them."

 

Josie is all smiles after completing her final radiation treatment

20 Rounds Down

 

Earlier this month, Josie came back to American Family Children's Hospital once again for her final radiation treatment. As she lay down on the table that would pull her body for the 20th time into the donut-shaped opening of the radiation machine, a blanket offered by the nurses kept her warm, along with her pink polka dot penguin socks. As Josie put her arms above her head, the red laser emitting from the radiation device divided her face, expressionless from the familiar routine.

 

Josie selected Christian contemporary artist TobyMac to listen to during this final round. With tracks like "Unstoppable," "Speak Life" and "Thankful for You," the soundtrack seemed to narrate the milestone perfectly.

 

Just minutes later, Josie emerged to once again find her mom Jessica waiting in the lobby.

 

"All done!" Jessica said as Josie showed her some gifts from the radiation nurses: Tootsie Rolls and a Magic Velvet coloring pad with ballerinas on the cover.

 

Mother and daughter together held up Josie's sticker chart, a pink calendar chronicling the past four weeks of radiation treatment. On Day 1, Josie had selected hearts and jewels. On Day 20, maybe feeling a little "zesty," Josie picked a pirate monkey. Footballs, whales, lady bugs and princesses filled the days in between.

 

"Can you believe it?" mom asked.

 

Josie had barely spoken all morning, perhaps embarrassed by the attention surrounding her final entry on that sticker chart. But Josie quickly responded – again, with a smile: "Yes, I can."

 

As they headed back over to the Farmers' Market Café, a card adorned with pink ribbons awaited Josie, from "Uncle D."

 

"You will never know how much inspiration you have given to me," Dan wrote. "You are an amazing young lady. I look at you and see the fight you are fighting and it just amazes me to see you smile. Your smile is contagious ... Please never quit smiling."

 

"I'm so glad that I have met you," Dan added. "Happy fishing."