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, he 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.”

After John finished eating, Scott got back and took him to the bathroom. They went to seven different floors until John found a restroom clean enough to use. “John was such a germ-cautious kind of person. He was so anal about germs he would even line the toilet seat at home with toilet paper,” Scott said. “You could imagine what it was like to find a clean public restroom.”

Meanwhile, Gina called her supervisor at work to tell him the news. It was a tough call for her to make. “I remember crying and asking him not to say anything to anyone until we had a chance to tell our family,” she said. His reassurances helped her tremendously. “I remember him telling me if anyone [could] handle this . . . it would be me. I feel this gave me strength.”

Back at her cousin’s house in Beaver County, Lexie didn’t know what was going on. Before they had left, Scott and Gina had done their own research and thought John might have Lyme disease. “I Googled everything possible and thought his symptoms matched up perfectly,” Lexie said. “I thought that was why he was so fatigued all of the time.”

After John got settled in his room, the nurse gave him a Benadryl and told him that he would sleep well. They were going to do a biopsy the next day. Scott and Gina waited until John fell asleep before leaving to pick up Lexie from her cousin’s house. When they told her John’s diagnosis, Lexie had no idea what that entailed. “I was twelve at the time,” Lexie said. “I had no idea what cancer was, what its capabilities were, what side effects [it] had, or anything. My thought of cancer back then was just a sickness, a sad sickness.”

When they got home, Gina packed an overnight bag. Her only concern in that moment was to stay by John’s side: “I didn’t want to leave John again. From the moment we were told John had cancer, I knew life as we knew it would never be the same.”

The Challis family would not have the biopsy results until Tuesday, three days later. It was a waiting game now. John looked so weak and depressed. Gina didn’t want to leave him, but John asked if his dad could stay instead. Scott recalled, “I think it was a guy thing—in case he had to go to the bathroom, I would be there for him. Sleeping in a chair was hard. I remember John throwing things at me because of my snoring. John said it was embarrassing.”

Since John’s biopsy was on Saturday, he wasn’t able to take a shower until Monday. Scott and Gina remembered John telling the nurses that he needed seven towels. Not knowing why, they just brought him the towels. “We forgot John’s slippers, and he wouldn’t wear those socks they give to the patients. . . . He said he would not allow his feet to touch the floor in his room,” Scott said. John made his dad line the floor from his bed to the bathroom. He even put towels in the shower stall so his feet wouldn’t touch anything.

That Tuesday, Gina, Gina’s sister Jody, and Scott went into a conference room to meet John’s oncology doctors. They met Dr. Kim Ritchey and Dr. Anthony Graves, and sadly, the results weren’t good. The doctors told them John had hepatocellular carcinoma, a liver cancer that had already gone to John’s lungs.

They were told that, with the size and the characteristics of the cancer, John had four to five months to live. As Scott said, “This just floored us.” Dr. Graves told them that he would be in John’s room in a couple of hours to talk to John. Later that day, Dr. Graves told John the disease would probably take his life.

Scott said, “Gina and I thought, wow, you tell a sixteen-year-old kid that he is going to die. That was hard for us to grasp.”

The doctor explained that John would receive five days of chemotherapy immediately.

John replied, “Well, let’s get started, then.”

The next morning, a nurse came to John’s room to take a medical history. She started by asking Gina family medical questions, such as whether there were any heart conditions in her family (there were) and if there was anyone in her family who’d had cancer (there was not). The nurse then turned to Scott and asked him the same questions. He told her there were relatives on his side who had passed from heart problems. She then asked him if anyone in his family had cancer, and he said yes.

John suddenly turned to him, and with great disgust said to him, “So you’re the one who gave it to me.”

“That really devastated me,” Scott recalled. “John was so bitter and angry. He never said it, but I could feel the tension between us for a long time.”

Adding fuel to the fire, so to speak, were the very insensitive remarks that a social worker at Children’s Hospital made to John shortly after his initial chemo treatments. During her conversation with Scott, Gina, and John, John mentioned his love of hunting and fishing, and the social worker told him that his hunting and fishing days were over. This incensed Scott. “I will never forgive her for saying that to him,” he bitterly recalled. “The first day of hunting season in late November and [of] fishing season in mid-April were two of John’s favorite days of the year, and for that lady to tell him that his hunting and fishing days were over . . . it just really, really crushed him at a time when he was already feeling so low.”

What the social worker that day didn’t know, and what many people around the United States and the world would learn, was that John Challis loved to prove people wrong. He was just getting started defying the odds and showing anyone who doubted his resolve and inner strength, or who made horribly insensitive comments, that he wasn’t going to back down or go down quietly in his battle against cancer.

The news of John’s cancer diagnosis was now being filtered through the local community, and it came as a shock to those closest to him. Dan Lentz, John’s high school assistant principal and basketball coach, had not noticed any changes in John during the season. Back in February he had received a call from Scott, asking if he thought anything was wrong with John. “Scott told me that Johnny wasn’t acting like himself and was always tired and fairly grumpy,” he recalled. “I told him I didn’t see him on a regular basis now that the season was over, but that I would talk to him. Johnny and I would see each other in the halls from time to time, and I’d ask him how he was. Johnny was never one to complain, so he never shared anything.”

Nothing could have prepared Dan for the call that Scott gave him one afternoon. “I really thought it was a bad joke,” Dan recalled. “I told him that was a horrible thing to joke about. Scott said he wasn’t joking: Johnny has stage IV liver cancer and they hope he makes it until Christmas.”

Dan and one of the assistant coaches, Ron Kelm, went to the hospital the following week. When they walked into the hospital room, they couldn’t believe their eyes. John was so frail—thin and pale—and they could see the IV port sticking out of his chest when he lay back. They brought John a basketball. “He was still typical Johnny . . . polite, smiled when we walked in, tried to downplay the whole thing,” Dan recalled. “Johnny told me that day that he was going to beat the cancer. He told me that day that he was going to graduate high school and still wanted to go to college.”

The next day, members of the football team came to see John, setting the stage for John to meet Taylor Dettore, someone who would become one of his best friends. “I was in the room next to John when he was first diagnosed. I was also recently diagnosed, and already bald at that time. My roommate and I saw all these hot football players walking into the room next to us, and being that we were sick and didn’t mingle with anybody, we were both creeping out of our window to see who was next to us.”

Taylor took it upon herself to be the ambassador on the floor and welcome the new patient. “I can’t deny that I was pretty drugged up on medicine, but I wanted to make a valid effort to reach out to any new patients because I knew it could be hard,” she said. “But God gave me the personality and strength to reach out to other people and not worry about myself.”

Her first meeting with John did not go well. As she remembered, “I walked over to John’s room and introduced myself. John was rude to me at first, but I don’t remember—or I just brushed it off. I know that when you get told something so serious, some people take a while to cope with it.” That didn’t deter her from reaching out to John. “I saw in John’s eyes that he was scared and sad, so I wanted to make a special effort to reach out to him. I would always invite him down into the teen lounge with me day after day, but he just didn’t want to. But as time went on, he and I became the best of friends, and I couldn’t have asked for a better friend.”

John started his five days of chemo treatments on Wednesday, June 28. Gina slept and showered at the hospital. Scott set up an office in John’s room, using two chairs for a desk so he could conduct business throughout the day. John never minded, except when Scott would get a little loud on the phone during the day and when he snored at night.

A month after his treatment, the family found out that the tumor and the spots had not grown or spread, but they had not shrunk, either. Another round of chemo was administered, and still the treatments were not working.

Scott told me he received a call from his sister-in-law, Joanna Jaworowski, about a liver cancer treatment that she had read about online: chemoembolization, a non-surgical procedure that delivers a high dose of chemotherapy to the tumor. It was being administered right there in Pittsburgh. Scott and Gina researched the treatment before calling the Liver Cancer Center in Pittsburgh to set up an appointment.

The doctor at the Liver Cancer Center was hesitant about treating John. He had never done the treatment on someone so young. Scott and Gina begged him to speak with Dr. Graves; they were desperate. Two weeks later, the Liver Cancer Center called them to make arrangements for John’s first treatment with Dr. Clark Gamblin. Gina remembered, “He made us comfortable and [assured] us that John was in good hands. This [was the] start of a great doctor-patient relationship.”