As Florida Gators fan Jay Ryon battles cancer, a team and community has rallied around him
Glance at your floor. Consider the time and effort it would take to clean and sanitize every square inch until it is scrubbed of bacteria. Now look inside of your refrigerator. Fresh fruits and vegetables? Throw them out. Leftovers from last night's dinner? Trash them. Stains from any food remnants? Scrub and sanitize them. Don't miss a spot.
Go to the freezer. Was any of that frozen food previously opened? If so, get rid of it. Bathroom instructions are simpler to explain, but no easier to execute: Toilet, sink, shower and bathtub must be fully disinfected after every use. No exceptions.
Now your clothes. Have you been outside? If so, remove them, shower and put some clean clothes on.
If you find these instructions exhausting, the presentation plodding or the process needlessly detailed, consider one more thing.
Imagine your childhood, when you were eight years old to be exact. Except, instead of the comfort of your living room, your home is a 63-acre botanical dreamscape full of trees and wild daisies. The Seminole State Forest, its blackwater springs, endless streams, bike trails, running trails and endangered species, is just miles away.
But you can only explore your limitless backyard in very select circumstances. With the wrong bacterial exposure, any significant bacterial exposure if you're sick enough, and you're headed back to the hospital.
Welcome to the life of Jay Ryon. Jay is eight years old and was diagnosed with Acute Lymphoblastic Leukemia in January 2014. The cancer is in remission, but Jay is often in a severely neutropenic state (he has fewer than 500 active neutrophils or healthy white blood cells), which requires his mother, Maggie, to keep the house pristine and Jay away from any bacteria. Jay's father, Nick, fills in when he's not at the Lake County firehouse for an overnight shift. If Jay is neutropenic, all attention must be honed on his surroundings. They're all too aware of the results if an infection takes hold.
Through it all, Jay has the Florida Gators. Nick was raised a Gator, Maggie an Ole Miss Rebel. Before Jay was old enough to dress himself, Nick and Maggie would alternate orange and blue outfits and red and blue garb for gamedays. When Jay could choose for himself, he picked the Gator gear.
Trips to the emergency room are usually accompanied by his stuffed Gators blanket and Gators T-shirt. If a game needs to be seen from the hospital, the room gets outfitted in Gator decorations. When he is home to watch a game, the Ryons set up a tailgate, complete with lights, flags, chairs and Gators pillows.
"Oof, Gators paraphernalia?" Nick says with a chuckle. "Well, right now there's a ton. A poster hangs on the bedroom door. A signed poster hangs in the living room. Just so much Gators stuff."
The next house tailgate will have a new feature—the game ball from Florida's 38–10 upset of Ole Miss signed by coach Jim McElwain with "CHOMP CHOMP" inked on each side of the Gators logo.
McElwain promised the team would fight as hard as Jay was fighting to beat cancer. Jay's reward was the game ball and an unforgettable four quarters. Even Mom, the die-hard Ole Miss Rebel, dressed in orange and blue.
Courtesy of Ryon family
No parent is equipped to hear that their child has been diagnosed with cancer, but Maggie spent years preparing herself for emotionally strenuous situations. The Camp Director for Easter Seals Camp Challenge in Sorrento, Fla., which hosts developmentally disabled people of all ages (primarily autism, down syndrome, cerebal palsy and spina bifida), Maggie honed her ability to work with special needs patients by securing her own emotional health. With a PhD in Counselor Education from Walden University, Maggie stresses the importance of focus and care for oneself before trying to help others.
"You can't work with people that have mental illness on a daily basis and maintain any kind of sanity if you don't properly take care of yourself," she says. "Your own wellness is crucial."
It didn't make the diagnosis any easier, but Maggie compartmentalized what she would need to care for Jay while maintaining her job. Since schools were now immediately unsafe, Jay would be homeschooled for the foreseeable future. Couple that with hospital visits that may last days at a time and impromptu operations, and her awareness required the same focus as her emotional stability.
That patience and understanding is something Maggie and her husband feel they've properly passed on to Jay. People are people. No matter how they look, how they act or how they dress, they are human beings. All of it, the training and how it was reflected through her son, brought Maggie some sense of peace until the next hospital visit.
She would need to find that inner peace in September 2014.
Unlike more than 90% of children who are diagnosed with Acute Lymphoblastic Leukemia, Jay did not immediately enter remission after his first round of chemotherapy. As a result, he would need frequent rounds of IV chemo over the course of his prescribed three-year treatment. It also required he undergo an experimental procedure typically preserved for those in need of bone marrow transplants.
The procedure sunk his active neutrophil count (think healthy white cells) to zero. As a result, he was more susceptible to infection. One infection last September put him on life support for three days.
"You don't forget when the oncologist looks at you to say that even if he makes it through the night, there's no guarantee that he'll wake up," she says.
When Jay awakened, he was provided with his first personalized memorabilia from the University of Florida football team.
Months before, Jay met Kathryn Papiana at the Seminole Town Center. Kathryn had seen the "Team Jay" Facebook page circulating on the Internet and was intent on helping the cute little boy trying to beat cancer. The first time they met, they took a selfie together in the mall. Now, they meet once a week if Jay is healthy enough to go outdoors. Every time they meet, every destination they travel, a selfie is snapped for posterity. Kathryn helped connect Jay to Florida the year before through wide receiver Chris Thompson, who sent Jay a signed poster when he was in the middle of three days on life support last September.
"Ever since I met him, Jay and I have been attached to one another," Kathryn says. "I make sure I'm more positive. You see what an eight-year-old is going through and you see the challenges he has and it puts things in perspective. It makes me look at life different because he's so positive."
Perhaps Jay's biggest fan of the 10,000-plus on his Facebook page, Kathryn would be ultimately responsible for Jay's rise from local hero to a team motivator.
Courtesy of Ryon family
It was an innocuous start to the week before Jay and his family were enveloped in the whirlwind of viral social media. Kathryn was prepared to drive to Gainesville to deliver Team Jay wristbands to the Florida athletic department. Before her 90-minute journey north, Jay and Maggie showed Kathryn the sign they made earlier that day: " Dear Gators, I'm beating cancer. Please beat Ole Miss!"
Kathryn asked if she could tweet the photo at coach Jim McElwain. Maggie agreed, even though she wasn't sure how Twitter worked. Her learning process would be swift.
"It still takes me about an hour to write a tweet," Maggie jokes. "But I'm learning."
Florida and Ole Miss fans alike latched onto the tweet, some asking if Jay could be present for the Gator Walk before the game, others asking where they could find the GoFundMe site to purchase bracelets and donate toward his treatment costs.
More importantly, Jay's story found its way into the Florida locker room. Multiple players slipped on Team Jay wristbands, several of which were visible from the CBS broadcast.
"Every time he'd see one of them, he'd jump up and down and scream," Maggie says. "We had to get the whole game set up outside because it was just too loud indoors."
Several players FaceTimed Jay before the start of the Ole Miss game and spoke to him directly, insisting the game was for him. By the end of the first quarter, the Gators had scored two touchdowns, made a blistering tackle on a punt return and ignited a home crowd that had little to celebrate over the past two seasons.
"I was shaking the whole time during the first quarter because of how they were playing," Nick says. "And I'm positive Jay had something to do with that."
The onslaught didn't cease over four quarters. Florida's 38–10 win over third-ranked Ole Miss vaulted the Gators into the Top 10 and gave the program arguably its biggest win of the decade. Quarterback Will Grier claimed kids like Jay were "heroes," safety Marcus Maye discussed the pride they took in playing the game for him. But just like a tweet started the unforgettable week, graduate transfer Josh Grady topped it off with one that will resonate with the Ryons forever.
Courtesy of Maggie Ryon
One more trip remains for Jay. When contacted by the Make-A-Wish foundation, Jay simply replied that he would like "to travel somewhere safely." Because of the necessary safety precautions, the foundation gave the Ryons an RV camper, which is slated to hit the road on Nov. 7 for Florida's homecoming game against Vanderbilt. Maggie can keep it properly sanitized and Jay can attend his first game at The Swamp.
What the family needs now is medical clearance. Jay is currently in the hospital recovering from an infection that resulted from a surgical incision on his neck, which required 152 stitches. He has remained in the hospital all week, his 127th day inside of one since he was diagnosed.
Maggie admits there's a long road before they can go to Gainesville, but hasn't lost her composure or confidence. She's remained at the hospital this week while Jay tries to beat this infection. Recently, they found Jay crying in his bedroom because he was too tired to move. "I hate cancer," he said as his mother consoled him. When he takes chemotherapy treatments through his spine, he is restricted to a wheelchair, which he can't stand. Ebullient as he remains most days, sometimes he lapses. But all three are positive that they'll be aboard the camper and in The Swamp come Nov. 7.
"I just have to stay positive," she says. "If I want my kid to come through this and he can look back on it as the best time and part of his life, I have no choice but to be positive. Of course it sucks. It sucks every day. Every day I wake up and wonder if it's the last day with my kid. But if it is? It's going to be the best day."
Until that day comes, the family will continue its rituals and traditions. Jay loves to paint his mother's toenails, so all three of them will gather and paint their toes the same color like they have for the past year. Even Dad rocks the pedicure at the firehouse. Once he's healthy enough to return home, Jay will hug Merida, his puppy that was born on the same day he was diagnosed. Merida was named after the princess in Disney Pixar's Brave. She's brave just like Jay.
After Nick delivered the game ball to Jay on Thursday, he cracked one of his biggest smiles and immediately wanted to play with it. Nick laughed it off and said this was the type of ball to go on the shelf. He admitted his heart raced when he picked it up from the UPS man.
Restricted to the hospital bed, Jay is currently on IV antibiotics to kill the slow-growing bacteria on his neck incision. Another surgery is a possibility. He was not much better, but no worse after the day's treatment. As bedtime came around, Maggie tucked Jay in dressed in his Gators jersey. The game ball was nestled safely in his arms.
To join Team Jay's Facebook page, click here