I Was Picked

by Howard Shapiro

  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.

  PART 2

  SOMETHING’S NOT RIGHT: JOHN’S CANCER DIAGNOSIS AND EARLY BATTLE

  In late April 2006, Scott and Gina began to notice a change in John. While he had once ridden his bike, played sports, and hunted and fished, John was now constantly fatigued. He had lost his appetite and was sleeping all the time. He said that he was fine, but still complained that his upper back was very sore.

  That spring, John had spent a lot of time riding quads with his good friend Travis Bell. Scott and Gina thought John was just pushing it and needed to slow down. They thought the fatigue was caused by overactivity and that the back pain was from a pulled muscle.

  John went camping for the opening of fishing season, and on the camping trip he was sluggish. He slept most of the day and had little appetite. When they got home, he seemed back to normal until the following Saturday night, when John came into Scott and Gina’s bedroom at one in the morning. Something was wrong. His whole body was shaking.

  “It scared us,” recalled Gina. “John was real scared too.”

  She and Scott took him back to bed, and Scott asked him if he was on anything. John insisted he wasn’t, so they decided to take him to the emergency room. John didn’t resist. Gina said, “My thought was that if he was on something, they’d find it.”

  On the way to the hospital, John kept saying how thirsty he was. He asked Scott if they could stop somewhere. They found an open convenience store, and John went in and got a bottle of Gatorade. He got back in the car and chugged the Gatorade. He was feeling better now, and when they got to the parking lot outside the hospital, John insisted he was fine. “He said, ‘Dad, I don’t want to go in,’ ” Scott remembered. “He never lied to us, and so I trusted his judgment and we drove back home.”

  Several weeks passed and there wasn’t much change, good or bad. John didn’t have much of an appetite and was still sleeping a lot. It wasn’t bad enough to insist on a doctor’s appointment.

  Scott recalled a trip that the family made to a Lowes store one afternoon. “Everybody pretty much scattered to get what they needed. So we all were supposed to meet at the register, and there wasn’t any sign of John. We started to call his cell phone, but there was no answer. We were walking all over the store, so we decided to go to the car, thinking he would be there. We got to the car, and again there was no sign of John being there. I went back in the store, knowing John always loved the lawn and garden section. I decided to walk through there again, and sure enough, there was John—sound asleep in one of the displayed lounge chairs.”

  One day shortly after that incident, John turned to his school athletic trainer, Vince Sinovic. Vince had been the trainer at Freedom High School for over fifty years, and John trusted him with everything. Vince told Scott that John came to him and said he was losing weight. Not thinking much about it, Vince joked with John and told him to eat peanut butter and jelly sandwiches. Then another week went by, and Vince noticed a change in John. He told Scott he started to see dark circles under John’s eyes. He told John to go home and tell his parents to go see a doctor.

  Scott recalled John coming home from the high school that day. He and Gina were sitting on the front porch when John walked up to them and said, “Vince said to take me to the doctor’s.” Scott recalled, “I was being sarcastic with John, and I said, ‘What a great idea. I wish I would have thought of it.’ [John] said, ‘Don’t be smart. Vince knows more than I did.’ ”

  Gina made an appointment with John’s pediatrician in Beaver. At the checkup, the pediatrician directed them to Children’s Hospital of Pittsburgh. He told Scott and Gina he didn’t know what was wrong.

  Meanwhile, John had a date set to take his driver’s test. As Scott remembered it, the whole process was a white-knuckle experience: “He read his book and had Gina and I take him out in the car every chance we could.” Getting his license was big for John, and getting it on his first try was even bigger. “He wanted to prove he could do it,” said Scott. “It meant everything to him to be one of the few members of his peer group to pass his driver’s test on the first try. John really felt like he had to prove a lot to people, and a lot of that had to do with his size, or lack thereof. His thought process was that he might not be able to make three-point shots or score touchdowns, but he could excel at other things.” John got his license on June 17, 2006, a week before his appointment at Children’s Hospital. He passed the test on his first try.

  John’s appointment was with Dr. Basil Zitelli at the Diagnostic Services department at Children’s Hospital. That day John had blood work, a CT scan, and an ultrasound done. The results came back sooner than they had expected. Gina, understandably nervous at the time, later recalled the tense moments leading up to the meeting with John’s doctor after the CT scan: “John and the tech came out of the room where they performed the CT scan, and John still had the IV port in his arm. Scott and I just looked at each other. We knew it wasn’t going to be good news.”

  When Dr. Zitelli met with them, h
e told them a large tumor was attached to John’s liver, with several spots that had spread into his left lung. The size, shape, and migration classified the tumor as malignant. John was admitted to Children’s Hospital immediately and told that he would receive his first chemo treatment a few days later.

  “He said that John had cancer, and I felt like everything just went into slow motion,” Gina said. “I didn’t want to look at John because I knew I would start to cry or scream. I know I asked the doctor three different times, ‘Are you sure?’ I kept asking him, ‘Are you sure, are you sure it’s cancer?’ ”

  “I remember when the doctor told John that he had a ten-pound tumor in his stomach, the first thing John said was ‘Will I have to get a shot?’ Then he said, ‘Can I still play football?’ ” Scott added.

  The doctor told John that he needed a few shots and to worry about football later. Then they went down to the lab for blood work.

  While they waited in the lab, emotion came out of John in a very uncharacteristic way. “There was a young two- or three-year-old child crying at the top of her lungs in the room next to John, and the more she cried, the more upset John got,” Scott recalled. “Out of nowhere John yells, ‘Can someone shut that kid up!’ I didn’t know what to think. The nurse comes rushing into the room to calm John down. That was about the only time I saw that kind of emotion out of John.”

  After the lab work, Gina and John went to the hospital’s cafeteria. They sat down for pizza, but Gina couldn’t bring herself to eat. “At that point,” said Gina, “I didn’t really know what to say to him. I couldn’t think straight.”