This article was originally published as the featured cover story in the Fall 2014 issue of Valley Magazine.
She’s the girl you see on campus wearing a THON sweatshirt and ball cap, with little bits of wispy brown hair playing peek-a-boo with the hat’s brim. Her ear-to-ear, toothy smile defines her and suddenly you realize,
“Hey, that’s Kayla.”
But wait, what’s her last name again?
“My boyfriend says I’m like Madonna,” Kayla Nakonechni says, chuckling as she smiles vivaciously. “People only know me by my first name.”
The fifth-year senior (whose last name is pronounced “KNOCK – ah- NETCH – knee”) became well known on the University Park campus when she was diagnosed with brain cancer in the summer of 2013, right after her junior year.
Since then, she’s endured up to nine seizures a day, a seven-hour brain surgery and three different types of chemotherapy – all while maintaining a 3.5 GPA in biology. Kayla swears by her mantra, “Life is tough, but I’m tougher.”
Kayla, a native of Scranton, Pa., says she gets a lot of looks as she walks around campus. Most students simply know Kayla as the girl with cancer, as one of the older THON children. But, she’s so much more than her diagnosis.
She’s a dancer, a sucker for romance novels and an avid crossword puzzler. And she wishes that more people would come up to her. Kayla wants to get to know the people who have supported her.
“I feel like people stare at me like they know me,” Kayla says. “Just introduce yourself! Say, ‘Hi, I’ve followed your story.’ Something more than ‘You’re Kayla!’ I would rather see a face and get to know them.”
But before Kayla can get to know you, read on to get to know her. The real her.
THE GIRL BEHIND THE CANCER
The first thing you need to know about Kayla is that she doesn’t do anything halfway. If she’s doing something, she’s doing it wholeheartedly.
Take her obsession with Nicholas Sparks books, for example. She has read every single one. And she’s seen all of the movies. During her interview in early October, Kayla spit out the release date of the newest Sparks movie, “Best of Me,” as if her life depended on it (and just in case you missed it, the movie was released on October 17).
When her nose isn’t buried in a romance novel, it’s crinkled in concentration in an at- tempt to complete a crossword puzzle. She considers the app “Crosswords” to be one of the best purchases she’s ever made. While she has yet to complete The New York Times crossword, the app serves her 250 puzzles from various newspapers across the country on demand.
Before she became a crossword puzzle solving, Nicholas Sparks book-loving college student, Kayla was a dancer. She began at the age of three, dancing until she finished high school. From ballet, tap, jazz, hip-hop and lyrical, Kayla made her mark at Carbondale Dance Academy over the course of 15 years. Unfortunately, the dancing ended when she came to Penn State. Kayla recounted the one Lionettes event she attended:
“Freshman year I went to one of their work- outs…and that was the end of it,” she says, giggling as she remembered the weightlifting and running.
Once she realized that her life as a Penn State student wouldn’t include dancing, Kayla discovered two more passions: Nittanyville and THON.
It was during her sophomore year that she fell in love with Nittanyville (formerly known as Paternoville), the band of students who camp in tents outside Beaver Stadium’s Gate A the week before a home game. These students are the first ones allowed in the stadium on game day.
Kayla says being actively involved in Nittanyville is mostly about school pride.
“It’s being front row and supporting our athletes and supporting everything,” she says. “I mean, I know it’s not just about the football but it’s the pride that we have in our school and our group mostly shows that – being the first ones to the game and staying the entire time.”
Nittanyville not only helped increase her sense of Penn State spirit, but it also gave her the opportunity to meet her boyfriend of two and a half years, former Nittanyville president John Tecce (class of ’12).
It was on the day of Joe Paterno’s funeral procession that Kayla decided to venture into a tent outside of the stadium to move away from the wind. John was the only other person in the tiny tent. She said it was “super awkward,” so she decided to have a little fun.
He had mini carrot sticks. That’s how we started talking, because I was making fun of him,” Kayla says. “Yes, we met through carrot sticks at a funeral procession.
And so the love story began. While Kayla was only a sophomore, it was John’s senior year. He was dancing that upcoming February in THON and Kayla had lots of time to spend on the floor as an OPPerations committee member. Of course, she brought her newfound crush some carrot sticks for energy during the 46-hour event.
While John graduated that spring, Kayla (then a junior) and her friend Chelsie Daugherty (class of ’13) decided to try and dance independently during THON 2013. Together the pair raised $13,000 for pediatric cancer and earned themselves spots on the floor in the Bryce Jordan Center. Unlike most students, the intrepid Kayla opted not to condition her body before being on her feet for 46-hours straight.
“Everybody says to train…I didn’t really train too much,” she says. “I had danced for so long, so I knew how to stretch out properly, but I kind of jumped into it not really knowing what’s going to happen. But I ended up doing better than I expected.”
But about three weeks after THON 2013, Kayla’s body hadn’t fully recovered from the extreme stress of the dance marathon – or so she thought. On March 10, 2013, Kayla had her first seizure.
Kayla would soon find out that she had just danced for 46-hours straight to raise money for pediatric cancer, unbeknownst to the fact that she herself was a pediatric cancer patient.
It was 6 a.m. on March 10, 2013 and after a night at John’s apartment, Kayla woke up with a strange feeling in her right arm. At first, she thought she had slept on it in a funny way.
“You know how you sleep on your arm and it gets all tingly? I just thought that I had slept on my arm wrong or pulled a muscle in my neck that was hurting a nerve or something,” she says. “You just start thinking of things that seem possible, but you never expect that.”
The first seizure was considered a partial seizure. Kayla could talk and she was fully aware of her surroundings. The muscles in her right arm began to spasm, her right hand felt deformed and her right eye kept opening and closing. Despite the weird symptoms, Kayla didn’t think much of it.
But two weeks later at the end of April, it happened again. Kayla woke up in the middle of the night to another partial seizure.
I went to reach over to get my roommate and I just collapsed next to her bed,” she says. “All I remember is people standing over me.
In an attempt to see a specialist as soon as possible, she made appointments at three different hospitals. Kayla kept one appointment with a new neurologist, Dr. Gilliam, in May at Hershey Medical Center. None of the other specialists could see her until September.
“I can only imagine what would have happened if I had waited that long,” Kayla says.
“By July, I was having nine seizures a day.”
The seizure medication wasn’t working as planned, and on July 4, 2013, Kayla had her first full-blown seizure – called a grand mal seizure. She said this seizure was a lot stronger. Kayla completely lost conscious- ness and control of her body.
“After my grand mal seizure, I was freaking out because you don’t have answers, so you don’t know what to do,” she says.
The doctors performed MRIs to see what was going on. As it turns out, Kayla had a lesion on the left side of her brain, which is why the right side of her body had been seizing.
The lesion had grown by the end of July, so the doctors booked her for an emergency brain surgery on Aug. 12, 2013. The doctors mentioned the possibility of the lesion being cancerous, but they wouldn’t know for sure until they could do a biopsy. It was then that Kayla began her blog, “Life is Tough, but I’m Tougher” in order to keep friends and family updated on her progress.
The day before her surgery, Kayla went with 14 friends and family members to Hershey Park in Hershey, Pa. She laughed as she recounted having a seizure on a roller coaster at the park—making light of the situation.
“I went to go sit down on one of the smaller roller coasters and right as I went to sit down I had one of my little seizures,” Kayla says. “People that were waiting to get on the ride next were like, ‘What the heck? She just ran off the ride!’”
The next day, Kayla made it through a seven-hour brain surgery awake. She was put under a general anesthetic so she wouldn’t feel any pain. The doctors had Kayla read “Peter Pan” while they were operating, just to make sure they didn’t hit any of the wrong nerves. The doctors would touch spots on her brain to stop her speech and her vision. The worst part, according to Kayla, was when the doctors stimulated her seizures by touching the location of her tumor.
While it might freak some people out to lay awake on an operating table with their skull cut open, that was the most intriguing part for Kayla.
“I like that I was awake. Everyone thinks I’m weird,” Kayla says. “But I think it’s more exciting.”
The doctors were able to remove the entire lesion during surgery. But one week later, Kayla had to make the two-hour trek back to Hershey for a follow-up appointment. It was then she learned that her lesion was not benign.
“I didn’t think it was just going to be a cut and dry thing,” she says. “I was waiting to hear something, not bad, but hope for the best, prepare for the worst.”
The doctor told Kayla that she had a grade IV Astrocytoma – the most aggressive form of this type of brain cancer.
“So he [the doctor] told me that it wasn’t benign and my dad just looked like he was going to pass out. He was ghost-white,” Kayla says. “And my mom just started crying. I just sat there, taking it in. I didn’t really cry. I don’t know why. It just was like, ‘What’s going to happen next?’ I was ready to know how to fix it rather than dealing with the fact that I had it.”
STRONGER THAN THE TUMOR
In an effort to continue living her life as normally as possible, Kayla wanted to get back to what she loves most: Penn State.
Just two weeks after brain surgery, Kayla traveled to MetLife Stadium for the Penn State game against Syracuse.
“I just brought earplugs,” she says, as if it’s completely normal to attend a sporting event after brain surgery. Despite having to take the fall semester off from school for treatment, Kayla only missed two Penn State football games during the 2013 season.
Her cancer treatment began shortly after her diagnosis: 30 days of radiation, six rounds of IV chemo and then she would continue chemotherapy with a pill. But the first pill chemotherapy dropped her platelet levels, which led to five platelet transfusions. But about a month before her 21st birthday, Kayla received some incredible news: she was eligible to become a THON child, meaning that the Four Diamonds Fund at Hershey Medical Center would cover all expenses not paid for by Kayla’s insurance or other means. According to the Four Diamonds website, any Pennsylvania family with a child under the age of 21 who is being treated for pediatric cancer at Penn State Hershey Children’s Hospital is eligible for Four Diamonds support.
“At first I thought it would be really weird [being a THON child], but I have another friend here who is also a THON child. She became a THON child the year before me. We befriended each other and she’s actually from my area,” Kayla says. “It’s a huge help. The Four Diamonds Fund is amazing.”
Kayla began her journey as a THON child with Nittany Nation, the student section of the men’s basketball team, as her supporting organization. She is continuing this year as the Blue Band’s THON child. After raising $13,000 as a dancer the year prior, Kayla says it was strange transitioning from a THON supporter to a THON child.
I could’ve easily paid for my own treatment with the money that I raised for THON.
As of right now, Kayla’s chemotherapy treatment is working. The doctors are not planning to take her off until it is necessary.
“I’ll be on it until everything is closed up and looks normal,” she says. “I don’t want to say I’m cancer-free because I’m still on treatment, but I don’t want to say remission. So we [my doctors and I] decided on ‘no evidence of disease.’”
As a biology major, Kayla is fascinated with her test results. She says her schoolwork has helped her better understand her diagnosis.
“I have such an intrigue about it because it [biology] is what I want to do,” Kayla says. “I like looking at my MRIs and seeing everything.”
While she won’t be on chemotherapy for- ever, Kayla will be on seizure medications for the rest of her life. She says she’s at her lowest point when having seizures.
“Every time I have one [a seizure] it bothers me more than having the tumor in the first place. It’s affecting my every day life,” Kayla says. “It’s affecting my writing and my memory a little bit. So I freak out when I have one, especially because they make me feel so funny and I’m wiped out for the whole day.”
Along with her boyfriend, Kayla credits her family for helping her to stay so strong through the entire sickness –and of course, her puppy, a Havanese, Maltese, Shih Tzu mix.
“My mom asked what I wanted after surgery and I said a puppy,” she says, her bright green eyes lighting up at any mention of her tiny dog.
Kayla named her new dog Gilly, after her doctor, Dr. Gilliam. “Gilly” stands for “bright promise,” she says.
Upon her graduation in December 2014, Kayla plans to attend graduate school and then medical school in hopes of becoming a pediatric oncologist – she says she will use her experience as a pediatric cancer patient to support others.
With the love and support from her family and her strong will to survive, Kayla isn’t losing hope any time soon. She has plans for the future, and nothing is going to stop her now.
There is a light at the end of the tunnel,” Kayla says. “You just have to get there.
Since this article was first published in November 2014, Kayla’s cancer has returned. In January 2015, Kayla updated her friends and supporters on her condition through her blog — two small tumors had been found in her left parietal lobe. She has been receiving chemotherapy treatments at Penn State Milton S. Hershey Medical Center for the last several months. However, despite all, Kayla still maintains her mantra that while life is tough, she is tougher.’
Our thoughts are with you, Kayla! — Valley Magazine Staff