This high school sophomore didn’t want to give up softball, even if it meant losing her life

Kiki Feliciano was diagnosed with synovial sarcoma in 2020.

(Leah Hogsten | The Salt Lake Tribune) "I love my room," said Kiki Feliciano, April 22, 2023 which is a place of solace and retreat when she seeks refuge to cope with heavy emotions in her fight with a rare form of lung cancer. On April 27, doctors told the family that recent scans revealed a new mass in Kiki's right lung. Her team of doctors advised her to remove it and undergo radiation. Chemotheraphy has stopped working.

Riverton • Kiki Feliciano doesn’t want them to take what’s left of her right lung.

As she sprints to beat a ground ball, her first at-bat in months, the sophomore infielder at Herriman High is breathing fine. Her joints ache from the chemo, but she’s breathing. Back playing the game she’s loved since she started rec league at 8 years old. Back with her friends while her family watches from the bleachers.

For more than three years, doctors have chipped away at her lung, removing cancerous tumors as they arrive. They’ve advised, multiple times, that she let them cut out the lung entirely. If she doesn’t, she may only have a few months to live.

Each time, Feliciano has said no because it might mean losing softball and having a lower quality of life.

“We all kind of collectively agreed that it wasn’t the best idea for me just because I didn’t want to live the rest of my life like that,” Feliciano said last month.

On a sunny April day, Feliciano is back for her first game of the season with the Mustangs, albeit on the junior varsity team in a rehab assignment of sorts. On this day, she bats first in the order and plays second base, but leaves early for a nail appointment because her prom is the next day. Normally softball is the 16-year-old’s main priority, her emotional outlet. But she doesn’t know how many moments she’ll have left.

On this day, as it turns out, she is unaware that a new mass is forming, and she’ll soon be faced with the most difficult decision of her young life.

A devastating diagnosis

(Leah Hogsten | The Salt Lake Tribune) Feliciano warms up while waiting her turn at bat during a game against Bingham High School, Thursday, April 13, 2023. Her third game back after her most recent lung surgery, Kiki's saving grace is softball. When she couldn't play or could only watch, those were some of the most difficult moments of her cancer fight.

Feliciano was diagnosed with synovial sarcoma of the lung in 2020, not long after her 14th birthday. Generally, that type of cancer originates elsewhere in the body and spreads.

Feliciano’s started in her right lung, which makes her condition very rare, accounting for only 0.5% of all lung cancers, per the Journal of Thoracic Disease.

In November 2019, Feliciano, then a seventh-grader at Oquirrh Hills Middle School, called her mom, Ashly, at work and said she had a headache and couldn’t take a full breath. Ashly picked her up and drove to urgent care where her dad, Jean-Paul, met them.

Doctors took an X-ray and found Kiki had a collapsed lung. It collapsed again in January 2020, when she learned she had lung blebs — small collections of air between the lung and outer surface of the lung — that would rupture, causing the collapsed lung to recur.

Kiki saw more doctors and later, when the results of a biopsy came back, the family received the harrowing news.

“It felt very unreal to me,” Ashly said.

In February 2020, doctors removed the lower lobe of Feliciano’s right lung in lieu of chemotherapy. The surgery was invasive and she spent a week in the hospital, but it worked. For the next 19 months, every scan came back clean.

Kiki lived a normal life. It got to the point where, at times, she forgot she even had cancer.

But in late September 2021, the blebs came back. A biopsy revealed that the cancer, too, had returned.

Fighting for her life

(Leah Hogsten | The Salt Lake Tribune) Feliciano. far left, and her teammates celebrate a scoring run against Bingham, April 13, 2023. "I don't want to be the person with cancer," said Feliciano of the possibility of being singled out. "I dont want that label." It's on the softball field, fighting for the win with those who are closest to her, where Kiki thinks about nothing else but the moment at hand.

The family decided it was time to try chemo. Kiki endured 18 rounds over the next four months. She had a seizure in the hospital bathroom before her third round. She lost her hair, fingernails and toenails. She harvested and froze her eggs because the treatment risked making her infertile.

Still, Kiki found a way to make it to softball open gyms and practices. She traveled to Laughlin, Nev., with the Herriman team for a tournament just days after completing a round of treatment.

“You could tell she didn’t feel great,” Herriman assistant coach Bree Dodge said. “But she just put a smile on her face and wanted to be with the girls and just wanted to be part of the team and be a normal kid.”

Kiki’s treatment ended in March 2022. In June, the cancer came back yet again, this time more aggressively. It left the family reeling and regretting the chemo treatment. Her mom said she feels chemo “pissed it off,” referring to her daughter’s condition.

After receiving a second opinion, Kiki started taking a chemotherapy pill called Votriant that produced less severe side effects — although it did cause her brown hair to appear as though it’s blonde with highlights.

The pill bought Feliciano seven months of cancer-free scans before it came back yet again in February of this year. She had surgery on Feb. 28 that removed parts of her diaphragm, chest wall and middle lobe. Since then, she’s been working her way back into softball shape by playing JV games.

But on April 27, the family got more bad news. Scans revealed a new mass in Kiki’s lung, and doctors again advised her to remove it and undergo radiation. Chemo will no longer help.

If Kiki had her way, she’d continue removing parts of her lung as needed. But that’s not sustainable with how often new tumors are recurring, Ashly said.

After many conversations within the family and consulting with doctors, Kiki will undergo an invasive surgery next month to remove her right lung, diaphragm, one rib and the sac surrounding her heart. Three weeks after the surgery, she’ll start radiation five days a week for six weeks.

Kiki is still pushing back against this course of action, but Ashly believes it could be what saves her daughter.

“If she doesn’t do this,” Ashly said, “she’ll die.”

The emotional toll

(Leah Hogsten | The Salt Lake Tribune) A tearful and grateful Ashly Feliciano is embraced by Lexi Nevin, Saturday, April 22, 2023, at the close of a fundraiser to help alleviate debts and costs incurred over the past 4 years fighting Kiki's synovial sarcoma. Although most fundraisers take a cut of the profit, April's fundraiser organized by friends, netted the family over $5,000 to help pay for Kiki's continued cancer fight.

As Kiki went through the brunt of her illness, her half-brother, Kasen Bagshaw, couldn’t take it. He didn’t want to hear about the doctor visits, the timelines, the surgeries, the chemo. For years, although he lived at home, he disengaged to shield himself from having to re-live what happened to his half-brother, Gauge Thornton, who died , from bladder and prostate cancer at 8 years old.

“All I could think is I just lost my brother and now I’m gonna lose my sister,” Bagshaw said.

Upon first hearing the word “cancer,” Jean-Paul and Ashly took different approaches to their grief. While Ashly dived head-first into denial, Jean-Paul vacillated between numbness, optimism and depression.

“There was a point where I didn’t wanna be here anymore because of it,” Jean-Paul said.

For a short time, Kiki saw a therapist and took antidepressants. But she found it easier to talk to her mother and others close to her when she was feeling down — like her friend, Bradley Morey, or her aunt, Amber Carlsen. Her dad said stopping the antidepressants allowed his daughter to process her situation fully.

“She wanted to feel everything,” Jean-Paul said. “She wanted to feel the anger, the sadness, the happy times, all of it.”

When it wasn’t clear what Kiki would decide, the emotions were closer to the surface. Members of her softball team caught themselves thinking about the possibility of her death practically every day.

“Any time I see her or when she leaves practice or leaves the game, the thought goes through my mind that this might be the last game that she plays, or this might be the last practice that she’s at,” Dodge, the assistant coach, said.

Kiki considers Morey one of the only people in her life who hasn’t treated her any differently since her diagnosis. He was the first person Kiki wanted to call when she first learned of the three-to-six-month timeline.

Kiki has found ways to cope. During her chemo treatments, she almost exclusively listened to Phoebe Bridgers, a popular singer-songwriter whose music features slower tempos and somber lyrics.

She writes questions on small pieces of paper, folds them and puts them in a glass jar on a nightstand next to her bed. She pulls one out and writes the answers in her journal. Some examples:

Do you believe in second chances?

Do you believe in love at first sight?

Do you feel real today?

The latter one, Kiki said, is related to how she felt during chemo.

“It’s easier to write my feelings down rather than explain them,” Kiki said.

Receiving support

(Leah Hogsten | The Salt Lake Tribune) Before the start of Herriman High School's softball season, each member of the team placed a blue decal of adesign that incorporates Kiki Feliciano's No. 18 jersey number and a butterfly wing. Feliciano's favorite butterfly is the Peleides blue morpho.

Kiki went to Las Vegas with her mom, aunt and cousin Haylee to see Taylor Swift on March 25 for the pop superstar’s Eras Tour. Armed with a VIP package, they each dressed up as a different album from Swift’s career.

It was an experience worth thousands of dollars, and made possible by a South Jordan-based nonprofit that aims to fight childhood cancer. It was just one of the many ways Feliciano has received support throughout her ordeal.

While Kiki is a sophomore in high school, she is home-schooled due to her illness. While at home, she spends the bulk of her time in her room. She plays video games, watches TV, reads, journals and hangs out with her golden brown double doodle, Tucker.

So when the time came for the Make-A-Wish Foundation to grant her something, she chose a room makeover. It included new paint and furniture, twinkly lights above her bed, a swinging chair that hangs from the ceiling and a telescope through which she often looks at the moon.

Kiki has attended several fundraisers for her over the years. Recently, she went to a drag brunch at a Marriott hotel in Sandy, and enjoyed an afternoon at a bowling alley in Riverton that included raffle prizes and custom jewelry.

The family has insurance to cover many of Kiki’s medical bills, but it doesn’t cover out-of-state travel to meet with other doctors, or anything out of their network. The family has a GoFundMe page and also receives donations through Venmo or cash at events.

Kiki recently took a trip to California to see one of her favorite bands, The Walters, and go to Disneyland. During that trip, the band brought her on stage to sing one of their songs. She also plans to visit Puerto Rico this November to see her dad’s side of the family. Those trips will be financed by fundraising money, Carlsen, Kiki’s aunt, said.

Ashly and Jean-Paul disagree somewhat on whether they consider themselves “in debt.” But the kindness of others has made the financial burden much less heavy.

“I have faith that everything that we have will pay for everything we have right now,” Jean-Paul said.

Those closest to Kiki constantly grapple with how best to provide emotional support to someone who “hates being seen as the person with cancer.” She was frustrated about playing JV softball instead of varsity, but also doesn’t want anything handed to her.

Before the softball season, each member of the team — along with some baseball players — placed a blue decal of a design that incorporates her No. 18 jersey number and a butterfly wing. Feliciano’s favorite butterfly is the blue morpho.

Some of Kiki’s friends show support by not bombarding her with questions about her condition. Instead, they wait for her to come to them.

“I try and be the friend that doesn’t really ask about her sickness, but I’m there for her when she wants to talk about it,” said Keira Rodriguez, Kiki’s teammate and best friend.

Finding joy, learning strength

(Leah Hogsten | The Salt Lake Tribune) From left, Kiki's brother Kasen Bagshaw belts out a country tune to the amusement and laughter of Jean-Paul, Kiki, Ashly and his girfriend Audrey Uribe, Sunday, April 16, 2023. One "saving grace," Ashly said, has been intentionally living day by day, because if they think beyond that, the unknowns become overwhelming.

One of Bagshaw’s favorite things to do with his half-sister is drive to an empty parking lot with her in his truck after a big snowstorm and do doughnuts and drift on the slick asphalt.

“She just has a big ol’ smile on her face the whole time, just laughs,” Bagshaw said.

It was only about six months ago that Bagshaw reengaged with the rest of his family and started intentionally spending time with Kiki. He takes her on drives, trips to Target or Walmart, gas station runs for candy and ice cream. He even bought her a set of Legos. When he thinks of the future, it’s buying a house and living with Kiki and Tucker.

Bagshaw said what “pushed” him to come back to the family were his regrets of not spending enough time with Gauge before he died.

“I have the chance now to do it with Kiki,” Bagshaw said.

Joy has been difficult to come by for the Felicianos and those close to them. But one “saving grace,” Ashly said, has been intentionally living day by day because if they think beyond that, the unknowns become overwhelming.

“We had to develop that to survive,” Ashly said.

Others find joy in just watching Kiki play, particularly after grueling bouts of chemo or just weeks removed from surgery.

“I think Kiki makes us better,” Herriman coach Heidi McKissick said. “She makes us better people and realize how precious things are.”

Feliciano’s pediatrician, Dr. Valerie Rahaniotis, is not surprised at Feliciano’s ability to push through.

“Interestingly enough, young people, when given difficult diagnoses such as these, often, surprisingly, really rise to the occasion,” Rahaniotis said. “You can’t even imagine the strength it takes to do what they’re doing, but they do.”

Even Kiki herself has learned valuable lessons.

“I’ve just learned that I’m stronger than I think I am,” Kiki said.

Moving forward

(Leah Hogsten | The Salt Lake Tribune) Jean-Paul Feliciano has tattooed cancer ribbons on his middle fingers and a blue morpho butterfly on his left arm, April 4, 2023. Kiki has said that when she dies, she wants to return as a butterfly. Each member of her immediate family has a tattoo of her favorite butterly, a Peleides blue morpho on their arms.

It’s April 13 at Bingham High School, and Kiki’s third game back after her most recent surgery. She’s still playing JV, but served as a pinch runner for the varsity team just a couple of hours earlier.

This time, she’s batting second in the order in the bottom of the first. She awaits a 1-0 pitch and connects, sending it between first and second base. “That’s all we needed!” McKissick yells to her.

Kiki scored the run later in the inning, and hit another single and slid into another run in the bottom of the third. To top off her performance, she fielded a grounder at shortstop and threw out a runner at first, ending the game and securing the win for Herriman.

Kiki’s saving grace is softball. When she couldn’t play or could only watch, those were some of the most difficult moments of her ordeal. Her mother played and even wore the same number her daughter wears now — No. 18.

It’s the game and her teammates that push her to heal from surgery or chemo treatment just so she can get back to them.

“That’s my escape for everything. That’s what I do,” Kiki said. “So not being able to go and hang out with the girls and be a part of memories and stuff like that, that stuff’s hard.”

What comes next might be even harder.

Kiki’s surgery next month means softball may be “gone for at least a year,” Ashly said. Kiki is still pushing back on the surgery, arguing that she is going to die anyway. She doesn’t want to spend weeks in the hospital and endure a yearlong recovery only for the cancer to return yet again.

“We’re currently advising her that, yes, there’s no guarantee that it won’t come back,” Carlsen said. “But in life, there’s no guarantee for anything. The chances of beating it are low, but they’re not zero. So as her family, we say fight.”

Ashley said her daughter is scared and angry. Fear and pain are not feelings Kiki typically likes to display. But that doesn’t mean she hasn’t thought of the worst-case scenario.

Kiki has said that when she dies, she wants to return as a butterfly. Each member of her immediate family has a tattoo of a blue morpho on their arms.

Turquoise and blue, Kiki’s butterfly wings bridge her forearm and biceps, floating and wandering through life along with her, living moment to moment.

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