PART 1

JUST AN ORDINARY BOY: EARLY STRUGGLES LEAD TO STRONG FAMILY BONDS

Things were not right from the start.

John Scott Challis Jr. was born on December 16, 1989. He was Scott and Gina’s first child and would be their only son. At birth he weighed five pounds, nine ounces and measured eighteen and a half inches. Everything seemed normal until two days later, when the newborn, who had yet to have a bowel movement, quit eating. John was rushed by helicopter thirty-five miles from the Medical Center of Beaver County to Children’s Hospital of Pittsburgh. He was baptized and given his last rites.

At Children’s Hospital, doctors performed emergency surgery to remove John’s appendix as well as a blockage in his intestines. Scott and Gina were told he had meconium ileus, an obstruction that occurs in a newborn’s intestines when the first stool they have is thicker and stickier than normal, creating the blockage. After the surgery, the doctors explained the prognosis: they were convinced John had cystic fibrosis. Back in 1989, the life-span for someone with cystic fibrosis was eighteen years.

While John was at Children’s Hospital, Gina never went home. Despite her episiotomy, she slept in chairs by John’s side, never leaving him alone. She and Scott celebrated John’s first Christmas there at Children’s Hospital. Gina recalled how much compassion the nurses showed through the ordeal: “They would bring little stuffed animals in as presents, and there was a Christmas ornament by John’s bed that a nurse brought in. That ornament still hangs on our tree every year.”

Finally, on January 2, 1990, two weeks after John’s operation, the doctors told Scott and Gina that they could take their son home.

At home for the first time, John had to be fed a special formula called Pregestimil, which was specifically made for infants who had trouble absorbing fat or who might be sensitive to intact proteins. To break any possible mucus in the lungs, Scott and Gina also had to do compression treatments on him twice a day. This involved hitting John’s chest, two places high and two places low, for three minutes on each spot. Then they had to roll him over and do the same on his back. Scott remembered Gina doing this: “Gina was just sobbing day in and day out when she did these treatments on him, while John just ended up falling asleep while she did them.”

A sweat test would determine if indeed John had cystic fibrosis. This was brutal on the mind, according to Scott: “The doctors performed two different sweat tests. Each time we had to wait a week to ten days for the test results, and each time they were unable to get enough sweat to determine if John had cystic fibrosis or not. The third sweat test was performed, and we were waiting on an answer.”

It was the second week of March. Scott was home early from work when he and Gina received a call from the Cystic Fibrosis Center. The results had come back, and the doctors wanted to tell Scott and Gina at the same time that they were 99.9 percent positive John did not have cystic fibrosis. “They said they were shocked, that they were sure he had it, mostly because of the meconium ileus diagnosis,” Scott said, explaining that this was the happiest day of his life up to that point. “Everything had been such an emotional roller coaster for three months, and now we could enjoy being a family.”

And so John became like any other toddler—playful and happy—with a stubborn streak he would carry throughout his life. Gina recalled one specific instance when John was four: “There was this one time he was just being so bad that we made him stand in the corner. After five minutes we asked him to say he was sorry, and he very succinctly said, ‘No!’ and turned around and put his nose in the corner. This went on for around an hour, and he started to get tired and then more tired, and finally he turned around and gave in and said, ‘Okay, I’m sorry.’ ”

John became very close with his maternal grandparents, Pat and Ben Tiberio. There was a very strong bond established early on, as they would babysit John (and later his sister, Lexie) from the time he was born until he was eight years old. “John was Pappy Tiberio’s best friend, and vice versa,” Gina remembered. “John would sit in his car seat and sing polkas every morning to [legendary Ohio polka band] Del Sinchak music. He knew the songs word for word. It was a real sight, and comical to watch.” According to Gina, John also developed his love for cooking from his grandfather. They would make bread from scratch, sauce, doughnuts, and pizza. By the time John was seven years old, he could make wine with the best of them. “He knew what to do,” said Gina. “And he was such a good helper to Pappy Tiberio.”

Gina said John was well ahead of the curve—at least when it came to his toys. Twenty years before the movie Ted came out, John had already lived out the scene from the beginning of the movie. “When John was three years old, he had a teddy bear . . . [whose] mouth actually moved, as if it were talking to everyone. It had a little tape that was placed in it to determine what the bear would say. So every time the mouth would move, John would think that the bear was talking right to him. . . . That led him to think that this stuffed animal was actually alive, and that it was his good friend.”

When his sister, Lexie, was born (February 3, 1994), four-year-old John was thrilled. Scott recalled when he came out of Gina’s room to tell the family: “I came out into the waiting room and gave a thumbs-up. John ran about thirty feet, yelling, and he jumped into my arms. He was so happy to be a big brother.” While he wanted to help out with Lexie’s feeding and overall care, he did have his limits, as Gina recalled: “John always wanted to help feed Lexie and just be in the middle of things. When it came to diaper changing, however, he ran the other way.”

Scott and Gina sent John to Saint John the Baptist Catholic School, where he made a lifelong impression on his kindergarten teacher, Terry Specht. “A teacher should not have a favorite student in their class. In my past twenty-eight years of teaching, I have prided myself on treating all of my children with equal respect and care. But every few years there is a child who really touches your heart. In 1995 a little freckle-faced, curly-haired boy with the most expressive eyes, named John Challis, made a big impression upon me. Yes, he was all boy. He had a love of everything little six-year-old boys liked: farts, potty talk, sports, running around, and making the six-year-old little girls crazy. But this little boy was special. He had a caring soul that few six-year-old children have.”

John did fine in kindergarten and first grade, but in second grade he began to struggle. He had trouble reading. He had trouble focusing. Homework was a battle each night. Gina and Scott had him tested. “He was struggling so bad, we were afraid he would be left behind,” Scott recalled. After a year of this, Scott and Gina transferred John into Conway Elementary, where the Freedom Area School District promised to help.

In public school, things started to turn around. John was able to get the help he needed to learn, Scott told me, through his teacher, Mrs. Zeigler. “John would come home and say, Mrs. Zeigler this and Mrs. Zeigler that. . . . She was definitely the influence that John needed.”

When I asked Cindy Zeigler what she remembered about John, her memory was crystal clear: “John came to us at Conway Elementary on Monday, October 19, 1998. He was squeaky clean. Brownish hair that was a little wiry, and cut short. His cheeks were cherubic and his smile went on forever. He always dressed very well; I remember seeing a brown-and-white-striped T-shirt with a crew collar (Garanimals type) and pants to match. He came to school with everything just right, but went home with some grass-stained knees and smeared playground dirt.”

She also recalled how caring the Challis family was and how much they were invested in his schoolwork. “I remember his family being very supportive and understanding. . . . They came to every function and were very truly interested in what was going on within the classroom. Often his Grandma Andi would come as well. She used to teach in the Freedom Area School District and she was quite relieved when he transferred there. John loved and was very proud of his family. He adored his little sister Lexie. He knew they loved him back. He was comfortable with himself and happy with just being John, even at such a young age. I feel this confidence came from his home and the love they gave him.”

Even though some things were turning around for John academically, he was still struggling with reading. He could pick things up well enough, but reading was something that just didn’t come easily to him. John didn’t let that get him down, and perhaps dealing with this daily struggle helped him develop his sense of not sweating the small stuff, something that became part of his message as he fought cancer years later.

In the afternoons, John would leave class for his learning support program. Some learning support students would hang their heads low, shoulders scrunched as they tried to disappear. Others would rush to the door as if hoping that if they were quick enough, no one would notice. But John was different. Instead he would grin, wave, and say, “I’ll see you in a bit, Mrs. Zeigler.”

“I truly believe this reflects his character,” said Cindy Zeigler. “No matter what age, John never showed regret or embarrassment. He didn’t sweat the small stuff; it was almost as if he knew at a young age what was important in life, and that pettiness really doesn’t matter.”

Scott told me that he thought John had obsessive-compulsive disorder because of his need for order and organization—that, along with John’s true affinity for his school supplies. After speaking with John’s learning support teacher, Lisa Nardone, I think that his armchair diagnosis was pretty spot-on.

“I worked with John throughout his middle school years,” Lisa said, “and one specific thing I remember about John is that he always came to school with the latest and newest school supplies. He loved Trapper Keepers, writing utensils, highlighters. . . . You name it, he had it organized perfectly!”

Still, that need for organization posed problems for John. He sometimes had trouble keeping up in the classroom because of the distraction posed by his supplies. “Sometimes he spent so much time changing writing utensils that he would get behind on what we were doing in class. I can remember hearing him rip open the Velcro to get into his Trapper Keeper because he would do it so much during class. There were times I would have to take some of these things from him because it was such a distraction. But then John would get distracted wondering when I would return his things to him. So I learned he was less distracted if I let him keep all of his supplies.”

John was becoming known for things such as his love for school supplies, his crooked smile, his thriftiness, and as he got older, his love for riding his bicycle. One person who got to experience these last two traits firsthand was his sister Lexie. She recalled a game they played growing up, in which John took slight advantage of her. She and John would turn their rooms into shopping stores, marking price tags on the things that were for sale; then they would go into each other’s rooms during the open store hours and buy things from each other with real money.

No problem there, right? Lexie then related the catch to me. “I would always have to be the first buyer, so I would go into my Johnny’s room and make the first purchases on pencils, erasers, board games, anything cool I could find, and I’d spend all my money. Then when it would be his turn, right after his store closed he would make some excuse, such as he had to clean up his store or he didn’t feel like shopping anymore.”

As they got older, their bedroom businesses closed for good and John got Lexie into bike riding. During summer vacation, John would ride anywhere from six miles a day to fifteen. In the evenings Lexie tagged along. “We would get into arguments while riding together, such as how I wasn’t able to keep up or me having to get off my bike to walk up a hill,” recalled Lexie.