PART 11

IT WON’T BE LONG: JOHN’S FINAL ACT

May 2008 was a busy month for John. As prom night approached, John (who loved to dress up) and his best friends Michael Tibolet and Dallas Betz decided to take their dates by limo to the dance. While the three couples waited for the limo to arrive, John received a call from former Pittsburgh Steelers fullback Merril Hoge. He wanted to know if John and Scott were interested in playing golf at his benefit outing. John didn’t know who Merril was—he had played for the Steelers a few years before John was born—and ultimately declined the invitation; he had a chemo treatment set for the same day. He wanted Scott and Gina to change his appointment because he thought it would be cool to play golf with all those celebrities, but the treatment could not be moved.

They must have talked for a good ten minutes, and from what Scott said, it was like they had known each other for years. Among other things, Scott overheard John tell Merril that he was on his way to the prom, and how sexy he looked. Scott also remembered that their neighbor, Dick Beitsch, came over as John was getting off the phone. He asked John, “Who are you talking to now?” John said it was Merril Hoge, and Dick remarked, “Who?” It seemed like they were longtime friends. Dick just shook his head and laughed.

Meanwhile, a Japanese film crew that had flown in from New York wanted to do a story on John, to air only in Japan. They followed around behind John and his date, Lauren Szpak. John noticed how much of a nuisance they were becoming, getting in everyone’s way and shining their lights. John finally said to them, “You have enough film,” and politely asked them to leave. They didn’t like it, but they left.

The Marriott where the prom was held prepared a room for John in case he did not feel well, just like they had the year before. This year, though, he had to use the room for an hour.

At the after-prom picnic, John and his friends went to the Pittsburgh Zoo and to a Pirates game at PNC Park. When John came home, he was excited that the president of the Pittsburgh Pirates, Frank Coonelly, had taken time to come to his seat and speak with him.

Even in the middle of the media frenzy, John continued to get his treatments. On May 19, John had his second TheraSphere treatment. This was a new type of treatment, in which millions of microscopic glass beads (the beads came from Canada) were embedded with the radioactive element Yttrium-90 and pumped directly into the artery that feeds cancerous liver tumors like John’s.

This second treatment went to the other side of his liver tumor. He also was continuing to take Nexavar to treat his lung cancer. Unfortunately, as John told his friend Adam Rose a few days after the second TheraSphere treatment, the liver tumor was not shrinking.

“He called me and he was really angry,” recalled Adam. “He said that the doctors were hoping that the beads would shrink the tumor, but that it wasn’t working. He then went on to say that he was not going to lose this one. I have to say that that was the only time when I talked to him that he let loose.”

As Freedom’s graduation day, June 5, neared, John stopped in Dan Lentz’s office to talk to him about the graduation ceremony, and as Dan recalled, John wanted to make sure everything was set up in advance, his way. John said, “Do you remember . . . I made a promise to you that I was going to graduate, and I did it. So when I walk across that stage, I want you to be the one who hands me my diploma.”

Dan told John that his job was to read the names of the graduates and that the superintendent handed out the diplomas. But John didn’t care; he wanted Dan to hand him the diploma. Dan promised to talk to the superintendent.

“The night of Johnny’s graduation was unlike any before. . . . It was surreal,” Dan said. Every TV station in Pittsburgh was there, along with at least three newspaper reporters and even a Japanese TV station.

Typically the number of people attending a Freedom Area High School graduation fit in the main set of bleachers at the football stadium with no problem. That night the bleachers were overflowing. Every step John took seemed to be recorded. Graduation began as usual, with various speeches. Then came the time to announce all the graduates, alphabetically, of course. Dan remembered, “When I got to Johnny’s name, I was supposed to read, ‘John Scott Challis Jr.’ I got ‘John’ out. The rest was pretty broken. Numerous people told me later that they were fine emotionally until they heard my voice crack.”

Once he called John’s name, Dan received the diploma from the superintendent and handed it to John. At graduation practice, they had worked with the graduates to accept the diploma with their left hand while shaking hands with their right as they posed for the photographer. “Johnny and I got the handshake down okay, but we didn’t practice the bear hug that followed,” said Dan. “For a good thirty seconds, a 95-pound eighteen-year-old kid dying of cancer held up a six-foot-eight assistant principal who was more than a little emotional right then.”

Gina recalled that, with John’s health and the media frenzy, graduation was an emotional time for her and the entire family. As she remembered, “I was so happy for John and proud of him, but at the same time scared because I knew what was ahead for us all. There were so many eyes on us, people watching what we said, what we did, and how we handled everything.”

The family threw a graduation party for John the next day, and Gina made sure it was a celebration that John, family, and friends would never forget. “When you walked in the hall I wanted it to be a happy time,” said Gina.

There were balloons and candy and nuts—everything in red and white for John’s school colors. Light music played in the background. Pictures of John were everywhere. “It was a very hot day and we had a lounge chair there for John,” Gina remembered. “He just hung out, and people would come down and sit with him. He was very relaxed.”

Lexie got John a special graduation gift as well: an iPod dock that she bought with her own money. “I just remember the biggest hug he gave me,” said Lexie. “I can still feel his hands around me, and that’s something I will never forget.”

After the Fourth of July, John’s health started to really deteriorate. The cancer was spreading and, sadly, was winning the battle. Still, there were times when John was just John. He had a notebook which he used to diagram what he planted in his garden as well as keep a list of phone numbers and email addresses. In this notebook he wrote the following:

I John Challis Jr. give my parents Scott and Gina Challis permission in the event of my death to donate my organs and or tissue to someone who can benefit from them. As long as I would still look normal at my funeral and would still look proper in an open casket setting. I have given this issue much thought and if I’m dead and have no chance of resuscitation of my life, I can’t use them so I figure, give them to someone who can benefit from them. At least someone will benefit from my passing. Please see to it that it gets carried out.

With thought,

John Scott Challis Jr.

My father and mother, Scott and Gina Challis have witnessed the signing of this document in the event of my passing. They have the right to make my medical decision to medical personnel.

The thing was, neither Scott nor Gina knew anything about this. John had taken it upon himself to write it and make his feelings known about donating his organs and tissue “to someone who can benefit from them.”

Lexie, too, did some writing. She penned the following note to John:

Dear Johnny,

So this week has been an emotional one for me. Not knowing why I am the one complaining when you’re the one who has to fight such a hard battle every day. You still manage to wiggle your way out of bed even though you know you have a tumor growing inside of you. You get letters each day saying how much of an inspiration you are to all kinds of people from all over the world. You probably weren’t expecting a letter from someone who sleeps across the hall from you. John, I remember the day I found out you had cancer like it was yesterday. I was at Aunt Jodos and I wasn’t too sure what was going on all that day with you. So, I wrote you a letter with some pen and paper that just explained how sorry I am for all the mean stuff I said to you over the years. Well John, over the past two years, days just haven’t passed, a new journey has begun. You’ve become a true hero to our town, our state and others across the world. I know there are so many questions that are unanswered and that you just grew to live with the fact that we don’t have some of the answers. In this letter I just really wanted to share my feelings with you. Over this time I feel your sickness brought us somewhat closer together. I try my best to deal with your sickness. Although, sometimes I don’t know how to handle my anger, stress and confusion and may take it out on you. And I am truly sorry for that. We have all said some mean things in our life that we feel is right at the time, but now do regret. I just want to let you know I love you very much and that you change my whole outlook on life. You made me look at things on a totally different perspective on life. I don’t want you think as this letter as me telling you goodbye. I want you just to read this letter, and just know how I feel about you, my brother. I want you to realize when it is time for you to go, whenever that is. If it is in a week, or twenty-five years, I just want you to feel it as a new beginning for you, a new beginning to a better place. I want you not to be scared. Don’t be scared about mom not handling it well or dad eating his feelings away. I’ll be there to take care of them; will get through it as a family together. Johnny, I love you so much. I truly believe this battle isn’t over yet. I believe it’s another obstacle that we’re going to have to fight through. John, I know you are not giving up. Everyone knows that. Just stay strong John, and keep believing.

Love your sister,
Sheepdawg

Lexie was on John’s mind too during this time. He expressed this in a phone conversation with Lena Holewski in late July. She shared the gist of that conversation with me.

“Lexie, to this day, thinks that John hated her. John never had hate for anyone. Especially Lexie. Of course they shared the brother-sister love-hate relationship . . . but anyone knows that siblings are supposed to share that. By far not John’s case. . . . We used to talk about death,” Lena said. “He always told me he was never afraid. Except once he finally told me he was not afraid, but he was not ready. He wanted to watch Lexie grow into a young woman, graduate from high school, go off to college, and meet a very special man that would take care of her so that one day he could watch her walk down the aisle. He wanted to one day be an uncle to her children and share his story and keep the positivity in the family. He told me that it was something he never shared with anyone. But it was the one thing that made him believe he wasn’t ready. He knew that if he passed away before all that happened, that of course he would be there. But being there spiritually wasn’t enough for him.”

John made his final public appearance on August 2. Karen Roman and the rest of the council members of Conway Borough invited John to be a special guest at the Conway Community Day celebration; they made him the honorary mayor for the day. John looked frail as he walked slowly with Debbie Rose, a council member. Conway Borough laid out the red carpet for him. WPXI, a TV station in Pittsburgh, came down to interview John about his role as mayor. He had had two or three snow cones in a row and had trouble talking. “I had to laugh,” said Scott. “The station worked with him until he got the feeling back in his tongue.”

According to Scott, John wasn’t going to speak that afternoon, so he had Lexie pinch hit for him. Mayor Trombetta handed the microphone to her, and she read John’s speech. As she went to give the microphone back to the mayor, John grabbed it and said, “Technically, I am the mayor today. So have fun, don’t break anything, and don’t cause any trouble. Just have a good day.”

Scott said that everyone had a great laugh. “It was a good day.”

The following week he spoke with his friend Adam Rose one final time. “I was at football camp for Geneva College, and John had left me a voice mail message,” Adam recalled. “I called him back at night, and he said to me, ‘It’s not good. I’m not doing good.’ Still, we talked about football, hunting, and fishing. I had been on vacation down in Myrtle Beach and John had been there the previous summer, so he asked me a lot of questions about what I ate when I was there, what restaurants I went to. He loved food right to the end.”

That same week, John had lunch with Shawn Lehocky. It was what happened at lunch that spoke to John’s true character and spirit. Shawn usually stopped over to see John twice a week, and this particular day John was craving a steak sandwich. They ordered food from the local bar and started eating at his kitchen table. Halfway through lunch he asked Gina for a red Solo cup, and they continued their conversation. “Little did I know that the whole time he was unable to keep his food down and would throw up every few minutes,” said Shawn. “He didn’t make a noise or a face, and it wasn’t until after I was finished eating that he informed me of what was going on. This speaks to John’s true character—he did not want to interrupt our meal or stop our conversation, even though it was making him ill.”

Scott recalled John’s last few days. On Tuesday, August 12, 2008, John was frail but able to walk. He had a doctor’s appointment at Children’s Hospital, so Gina, John, and Scott parked in the garage. John got out of the car and walked in all right, but the nurses put him on a gurney when they reached the examination room. “I’ll never forget the male nurse taking John’s blood pressure and pulse, and he said it was 120 over 80 or something like that. He said his pulse was 70. . . . His pulse was never 70. John called him on it, and the nurse said, ‘No, you’re good,’ ” recalled Scott.

John made Scott get family friend Lisa Land to ask someone else to take care of him and take all of his vitals. He knew his pulse was never perfect. Lisa made a call and another nurse showed up to take it again. John had been right. The pulse was just where John said it was supposed to be at: 90. It was always 90. “I know it sounds petty,” said Scott. “But to John—if his chart said one thing and his pulse was really something else, this is just another example that he knew what was going on in his body.”

After the blood pressure and pulse ordeal, John was lying on the gurney, and out of nowhere he called Gina over. He said, “Mom, tell Dad to put the oil can away that was in the corner of the room.” Scott asked him what he was talking about, but Scott knew it was the beginning of the end; he had read that hallucinations were the start of the final chapter of life.

John had his appointment in the afternoon and had walked into that appointment on his own. But by the time they left, he had to be taken out of the hospital in a wheelchair. It was night and day in just a matter of hours.

When John came home, the family knew it would not be long. He had no body fat. All they could see was bone, the bone around his eye sockets and jawline. “I never thought it would be like this,” said Scott. “He was so weak.”

John was a big fanatic about brushing his teeth. He brushed his teeth for five minutes twice a day. The Thursday before he died, he was so tired and weak that he couldn’t hold the toothbrush in his mouth. Gina held the toothbrush for him, and John moved his head back and forth to brush. “It was so sad, but comical at the same time, because he was so determined to brush his teeth that day,” recalled Scott.

From that day forward, John faded in and out of sleeping. On the last Saturday of John’s life, August 16, 2008, he woke up hungry for something refreshing, so Gina stepped out to buy him a root beer float. Other than the teaspoon of applesauce he had that evening with his pill, this would be John’s last meal.

That day, John’s friends came to the house. They sat in the living room with him and just talked. “You could see the sadness in their eyes. When they said good-bye, they hugged him. Some families don’t want people around when this happens to them, but it made me feel good to see his friends there. We know it made John feel good,” said Gina.

The Monday before John passed, he was having trouble taking his pills. The only pain medication he was getting was from a pain pump that Trudy from hospice had hooked up to him.

Scott recalled John was out in a deep sleep Sunday and Monday. “I thought he was comatose, and I remember going in his room. I sat next to him. I grabbed his hand. I remember telling him it was time to go be with his Pappy Tiberio in heaven, and that I would take care of his mom and Lexie. I swore to him that I wouldn’t start drinking or smoking again. John had that fear after he got sick that I would start again. I quit smoking in 1986 and I quit drinking in 1996. Well, I went on for ten minutes more or less telling him he could die, and all of a sudden he opened his eyes and he said, ‘No!’ Then he shut his eyes and went back to sleep.”

The night of August 17-18 was one of the hardest. Gina had been sleeping on John’s bedroom floor for the last two weeks. At nine o’clock in the evening, she sat on a chair in his room and watched TV until midnight, when she decided to get some sleep. She slept for about two hours before waking up. She needed to talk to John. She knew he didn’t have much time left. She held his hand and put her mouth really close to his ear so he could hear her better. “I told him I loved him and that I was proud of him. I told him I was glad to be his mother and that he was a wonderful son,” Gina said.

Tears were coming down my face as she recalled this. “I told him God was coming for him, and he needed to go with him [so] that he wouldn’t be in pain anymore. I told him his dad, Lexie, and I would be okay, and someday we would see him again. About this time his eyes would open, and I just closed his eyelids. I felt his mouth was probably dry by now. . . . I had a bottle of water, so I took the cap off of it and filled it. . . . I put it in his mouth, and he swallowed it. I filled the cap up five more times, and he swallowed it. I said some prayers and asked God to be with all of us. I’m not sure how I did this, but being his mother, I knew I didn’t want to be anywhere else. I know I didn’t move until about seven in the morning.”

Gina’s sister Joanna stayed Monday night going into Tuesday. Gina slept on the floor in John’s room again that night, and Joanna joined her at around seven in the morning. “Because I’m very hard of hearing, I had John’s walkie-talkies we used for hunting—one for John’s room and one in our bedroom. I could be there faster if Gina needed me for any reason,” said Scott. “John wouldn’t ever use a bedpan or anything. . . . If we had to drag him to the bathroom, that’s what we had to do. . . . He would crawl if he had to.

“It was exactly seven in the morning, and my walkie-talkie went off. I went running into John’s room . . . Gina asked me, ‘What’s wrong?’ I said, ‘The walkie-talkie went off, and I came running.’ I turned around and looked at John. John never spoke, [but] his eyes were open, and I said, ‘Are you in pain, buddy?’ and he blinked his eyes. So I went over and pushed his pain pump and he gave me a little smile. I told him I loved him, and he squeezed my hand. That walkie-talkie was clear across the room. . . . How did it go off? That was the first time I saw John’s eyes open in two days, except when he opened and closed them when he yelled no about going to be with his Pappy. He didn’t do it, just one of the many weird things that happened.”

Gina remembered how as the morning went on, his chest would go up, then go down. She would wait for his chest to go up again—then all of a sudden, it would. “We just knew today was the day. John was holding on for something. Coach Wetzel [hadn’t] been around for a week or so. I knew this was real tough on him, but I had Scott call him and he told him we needed him to come over. Something was holding John on. I didn’t know if John was waiting for Steve to come back to see him before he gave in.”

Trudy, the hospice nurse, came over about ten-thirty to check on John. She rinsed John’s mouth out with a little green sponge on a stick, doing everything she could to make him comfortable. She was certain it would be today. Before she left, she sang “Amazing Grace” to him.

“I realize how hard it would be to do that kind of work. It takes a special person, and Trudy was special,” recalled Gina.

Three more people came over that morning and afternoon: Jackie Knopp, a friend of John’s, and Joe Signore and Steve Wetzel. Steve showed up around eleven in the morning and stayed for an hour. “I know it was hard on him. I could see it in his eyes,” said Gina. Jackie showed up a little bit after, and Joe came at twelve-thirty.

Shortly afterward, Gina took a shower and Scott put a rack of ribs on the grill. Right then, Joe got Scott and told him John had passed. “I was just starting to dry my hair when Scott knocked on the door,” recalled Gina. “I really didn’t want to open the door because I just knew why he was knocking. I opened the door, and Scott said John was gone. I went straight to his room. It was so sad. I think at that moment I became numb, and part of my heart went with John forever. John passed at 1:40 p.m.”

On Tuesday, August 19, John’s two-year battle with cancer finally ended.

Joe Signore recalled his feelings and memories of that day. “Perhaps my only bittersweet story about John was on August 19, 2008 . . . the day he had won his race. I had not seen John for a couple days and certainly had no intention of seeing him this day. It was an extremely busy day at work, and at lunchtime I just wanted to go home and make a tomato salad for myself. Afterward, knowing that I had [an] . . . appointment, I got in my car and headed back to the office. To this day, I do not know how, when, or why I drove past the right-hand turn to Beaver that I have made for eight years [at that time], but I ended up in the Challis driveway,” he recalled.

“It was now a quarter to one or so, and I figured I might as well say hi to John since I’m [there]. Selfishly, I remember almost pulling away due to time constraints. I walked into the home and Gina was quite thankful to see me. She asked if I would mind sitting with John while she took a shower. No problem. I went into John’s room and saw him lying on his bed, asleep. Every bone in his chest was visible, and it appeared he was struggling to breathe. I held his hand, and in his ear I whispered that if he could hear me, squeeze my hand. He gently tightened it. Despite his current physical shape, as I sat there I was convinced that I was watching a true warrior, a modern-day hero, a champion, a true child of God—a man among boys. It was a moment for me to reflect on the accomplishments this soldier had made in the past two years. The people he met and touched; the trips he made; the example by which he led; the opportunities he took to spread his message and touch the world. A simple man lying in a simple bed in a simple house in the simple town of Freedom, Pennsylvania, and how much could be accomplished through simple love. That was John. Not perfect, not a god, not an attention seeker, not egotistical or self-centered. Just John from Freedom, Pennsylvania.”

Joe continued, “It was maybe ten minutes later that John took his last breath, with his mother still in the shower. God gave him much favor with his last breath, as even though I was watching him and holding his hand, I never saw it. It was the peace that surpassed all understanding. It was like the coming of spring.”