John with Benjamin Jaworowski, Lexie, Anna Jaworowski, and Gregory Jaworowski at Jody Jaworowski’s basement.
Scott and John at Challis house driveway, waiting for Limo for Senior Prom.
John at graduation, hugging Vice Principal Dan Lentz.
Family picture on Graduation Day.
John leading the Tassel Ceremony after receiving diploma.
John sharing a proud moment with Gina after Graduation.
John with Lexie on hotel balcony at Myrtle Beach.
John with Steve Wetzel at Tinitique Café & Tavern, Beaver, PA.
John after receiving WTAE Athlete of the Week Award with Coach Steve Wetzel.
Before First Pitch at June 25, 2008 Game: The Pirate Parrot, Mike Tibolet, Adam Rose, John Russell, Scott, Steve Wetzel, Dan O’Leary, Lexie, Gina, John.
John with Joe Maddon of the Tampa Bay Rays.
John meeting with the Pittsburgh Pirates before June 25, 2008 game against the New York Yankees
John with Alex Rodrigues before July 2, 2008, game at Yankee Stadium.
John with the War Dogs Motorcycle Club delivering Stanley Cup final tickets.
John’s final public appearance at Conway Days, where he was named Honorary Mayor.
John with Mike White at Challis family house.
At graveside for John’s 21st Birthday, Joe Signore fulfilling John’s second request. From far left to right - Susan Lamping, Karen Ellis (adult), Mike Goedeker (white hoody), Anna Jaworowski (with white hat), Benjamin Jaworowski (red hat), Gina Farzati, Brad Brummitt, Joanna Jaworowski, Kristen Milanovich, Denise Divittis and Joe Signore
Front of John’s gravestone.
Freedom Post Office, dedicated to John June 2010.
John Challis 44 Cent stamp unveiled at the Post Office ceremony.
Bill signed by President Obama.
Heinz History Center display for John
Coby Johnson’s bedroom wall (8 years old), Berwick, ME.
The Challises received good news on November 7: John’s CT scan results showed that some of his tumors had decreased in size, both in his liver and lungs. This was the start of the many emotional roller coaster rides they would experience. The oncologists were very happy and said that even if there was no change, they would have been thrilled to see that the tumors weren’t growing or spreading.
Gina and Scott remembered one of John’s earlier treatments, where his potassium levels were too low and they had to give him an IV to increase the levels. “John was so upset because the nurses told him he was leaving at ten in the morning, and it wasn’t until after two o’clock in the afternoon when we left,” Gina said.
“I always said the worst thing the doctors ever told John was that he was in charge of his treatments,” Scott told me. “When John went back for more treatments after this time, he told the doctors and nurses, ‘If you’re going to check my potassium, you check it earlier, like at one in the morning, because I’m leaving at ten o’clock like you told me.’ John had Dr. Clark Gamblin (the head at the Liver Cancer Center at Montefiore) put this on his chart, and the nurses did this for him going forward.
“Another time it got to about a quarter to ten, and John still had an IV in his arm. The nurses were really busy, and John was so impatient that he started to pace the halls, hoping someone would notice he still had his IV in. When no one was coming, he decided to take out his own IV right in front of Dr. Gamblin. Blood started to shoot everywhere, and John got the attention of the nurses pretty quick. John was discharged right on time.”
As the holiday season approached, and with the future uncertain, John’s family and friends tried to make it his best and most memorable Christmas. When people asked John what he wanted for Christmas, he told them he wanted tools for the house he would have one day. John’s favorite teacher at Freedom was his woodshop teacher, Bert Pickard. He and John developed a great bond, and John really trusted and looked up to him. Bert taught John that a person could do anything with the right tool. As Scott recalled, “John lived with that philosophy until the day he passed, and he was saving tools for the home he would have someday.”
John loved Christmas and put up his own Christmas tree—one he had bought for his own future house, but he went ahead and put it up in the family’s basement. He also bought Gina a snowman ornament with all four family members’ names on it. That ornament still hangs on the family tree today. “I really have a lot of special memories of that ornament,” Gina told me as she thought back to the Christmas of 2006.
As 2007 started, John received another round of the chemoembolization treatment. Everything went well. Gina even got to sleep in a bed beside him that night instead of a chair. When he came home, he tried home schooling, attending Freedom only when he felt up to it. He was taking all of the classes that he needed to take to graduate—biology, algebra, history, and English—and he took woodshop from Mr. Pickard at home. John’s woodshop project was to build a storage box for his golf cart so he could carry his books and anything else he wanted to. All the teachers gave John homework, and when John had homework, Scott had homework. John tired easily, so Scott did a lot of his typing.
It had been over six months since his cancer diagnosis, and the Challis family was still getting used to their lives turning upside down. On top of everything else going on with John, Scott and Gina were fearful of a break-in due to the fact that they were storing so many pain pills and other medications in the house. In fact, Gina took to hiding some of the meds in three different parts of the house.
It was a very chaotic and confusing time for Lexie, who was then only thirteen years old. As she recalled, “I really didn’t understand what was going on at that time, after the first of the year [2007]. I didn’t understand why John’s medicine would make him vomit or why he would get really bad anxiety attacks.”
When John spent nights in the hospital, Gina would stay with him overnight, and Scott would stay at the hospital but come home to get Lexie ready for bed. She had to grow up quickly. “It was a combination of things,” Lexie said. “I didn’t really know what was going on with John, and I had to make sure I had everything ready for school, basketball, or cheering practice . . . remembering who my parents told me was going to pick me up from here and take me to there. It just all seemed a little crazy to me.”
On March 13, 2007, John’s CT scan showed that the tumor in his liver had gotten bigger. A week later, John received another chemoembolization treatment at Presbyterian. His last chemo treatment had been administered ten weeks before. In between there were doctor’s appointments and visiting nurses coming to the house several days each week, along with trips to the local pharmacy to fill John’s various prescriptions.
When asked by friends or neighbors how she was holding up during this time, Gina was very pragmatic. “Probably nine months went by, I think, and I started believing, okay, I have some time,” she recalled. “He’s dealing with it, he’s getting treatment. I remember somebody saying to me once, ‘Aren’t you tired of going for treatment?’ And my answer was ‘No, because as long as we go for treatment, that means he’s still alive.’ ”
After returning from his fishing weekend in April 2007, John wanted to stay busy, and he did so by preparing for his school’s junior prom in May. Even though Scott and Gina were nervous, it turned out to be a wonderful evening. “He went to the prom with his friend Jackie Knopp. A bunch of them got a limo, and all of John’s family and friends got to see him all dressed up. When John and Jackie came out for the grand march, they received the biggest ovation,” Gina said.
Scott and Gina were very nervous about John making it through the entire night, so Scott made arrangements with the Marriott, the hotel where the prom was held, to get a room for John in case he got tired and wanted to lie down for a while. The Marriott told Scott and Gina not to worry; they gave John a room at no charge and loaded it up with all kinds of snacks in case he got hungry. As Scott recalled, “It turned out John never went to the room, and when people we
re sleeping or napping in the corners, John just kept going.”
When John came home in the morning, Gina was awake (and very relieved). John wanted to stay up and tell her all about the whole night that he and Jackie had had. He told her he was already thinking about next year’s senior prom. Later that afternoon, after a short rest, John and Jackie and another couple went fishing and had a post-prom picnic. “Jackie was quite a friend to John,” Scott said.
At his doctor’s appointment a few days later, his scans showed that there was no change to his lungs, and that the tumor in his liver had shrunk almost one full inch. A week after, he had his sixth treatment, and it went well. A gel was put into his liver to keep the meds there, preventing them from affecting his kidneys. He came home from the hospital and received his regular fluids. He also had a pump for his pain medication (Dilaudid) this time. This recovery from treatment was his fastest ever. As Scott recalled, “We as a family started to really feel he was going to beat his cancer.”
With the new chemoembolization treatments, John’s hair had all grown back, and toward the end of his junior year of school, he attended a party at Taylor Dettore’s family farm. She threw a party for all of the kids she had met at Children’s Hospital. After their rocky start, she and John had become very close friends. Their conversations, as Taylor recalled, were deeper than the typical teenage conversations about school, friends, bands, or sports. “We’d talk about feelings that we really did not share with our parents or friends because we both had a reputation of being so strong and positive. Therefore at times it was hard, but we had each other,” she told me.
By the end of that summer, John had his senior picture taken, and right after Labor Day his scans showed no change to his lungs or the tumor in his liver. It was now time for John to pick what his senior project was going to be. This was a requirement to graduate at Freedom High School. He had no idea what to choose. He talked to Scott about it, and his dad suggested, “Why don’t you do something you know about . . . your cancer treatment.”
John loved that idea and went to Dr. Gamblin. He asked him about using his CT scans and how he could learn to read and explain them to people. Dr. Gamblin told John that whatever he wanted, he would get for him.
John was excited about his choice; he wanted nothing but a perfect paper. He continued to get his synopsis ready and didn’t waste any time getting all the information for his project. A week after starting the project, John had another chemo treatment for his liver tumor. He had Scott take pictures of him throughout the day—from the time he woke up until when he walked into UPMC Presbyterian for the treatment. Scott was not allowed to go into the actual treatment due to sterilization issues, but the hospital made sure John got the scans showing the chemotherapy drugs going into his liver.
He had new scans taken afterward, and these showed no change in his liver tumor, but they did show new tumors in his lungs. In addition, some of the original tumors in his lungs had grown in size. His recovery from this treatment was slower than usual, and he had more intense lower back pain as well. He had his fluids and pain medication pump for several days at home after this procedure. He went to physical therapy as he had done in the past, and he also started to see a chiropractor to help alleviate some of his back pain.
A year and a half into John’s diagnosis, Scott was still spending his lunch hours looking for new cures or treatments for cancer. He came across a drug called Nexavar. He researched it and even called the son of a man in California who was being treated with it. There was a grueling list of side effects, but overall this man’s dad had lived longer on this drug than doctors had expected.
Scott gathered all the information he found on Nexavar and took it to Dr. Graves. Five weeks later, Dr. Graves called Scott back and said, “Do you remember that drug Nexavar you sent me all the information on? I think we want to try it.” Scott told me about the pride he felt after Dr. Graves said this: “I was so happy; I felt like I was part of my son’s treatment.”
In November John’s scans still showed no change in his liver tumor, but there were new tumors in his lungs, and the existing tumors there were growing. He started with a full adult dosage of Nexavar. After ten days on it, he experienced many side effects, including loss of appetite, rash on his body, mouth ulcers, and pain in his hands and feet. When he stopped taking it the day before Thanksgiving, the symptoms went away. A week later he began taking Nexavar at a lower dosage.
John continued to experience severe back pain. Lexie and Gina would rub his back, which helped, but it was difficult for them to see him in such pain. He had bad anxiety and got worked up when his back ached. Lexie recalled one harrowing instance from that December. “I remember one time John and I were home together, and John had the worst back pain. His anxiety then kicked in to where it’s almost like he couldn’t control his feelings, pain, or breathing. I just remember lying in my parents’ room with him; I made it really dark and sat and rubbed his back. I was so scared. I know his medicine made him act the way he did, but that’s just one example of the side effects of cancer that not everyone sees.”
In addition to anxiety attacks, he experienced frequent nosebleeds, nausea, and mouth sores, all of which were side effects of the medication. Around this time he developed a real appreciation for tart or strong-tasting food. He loved blue Jolly Ranchers and the tartness of lemons.
As the holidays approached—notwithstanding John’s physical pain—Scott recalled there being an air of optimism in the family. “John’s Uncle Tom came in from Los Angeles with his daughter Kaitlin for Christmas, and I continued to think John was going to beat this. Christmas turned out to be great! Again all John wanted were tools and stuff for his house when he got one. John was always buying stuff for his house. He constantly would say to me, ‘When I get my house . . .’ ”
After New Year’s, John focused on his health and his goal of graduating with his class. He made it to school when he felt well enough, and on those days he always stopped to speak with Dan Lentz. Dan recalled how they used to talk almost every day, but John’s health was a subject that was never part of the conversation. “Johnny told me once he always liked coming in to talk to me because I never talked to him about the cancer. I always made sure to talk with him about something else. I figured every person he talked to asked about his health. So instead, we talked about basketball, football, girls, family, school, college, and so on,” Dan said. “I’d always make sure to tell him what a great job he was doing handling all of the attention, and what an impact he was making on everyone. And he’d almost always say the same thing: ‘I didn’t ask for this. I’d do anything to change it. But this is what God wants me to do, so the least I can do is make the most of it.’ ”
On January 8, John had routine scans done. They showed that the tumors in his lungs had grown. One nodule near the airway was large. There was no change in the liver. The doctors planned to increase his dosage of Nexavar.
That January, John went on a school ski trip to the Peek’n Peak Ski Resort in New York. Compromising her fear for John’s safety for the sake of his desire to live as normally as possible, Gina agreed to let him go on the trip. But it wasn’t easy. “I was so nervous. It wasn’t like we were five minutes from him,” she recalled. “John had to prove it to himself that he was still independent. John was the one who had to be in control. This was the first time John had gone away on his own, and everything went well on the trip. He had a great time with his friends.”
At home, John’s days and nights were backward. He napped all day and wanted to stay up all night. He had scans done in February, earlier than usual because the side effects from the Nexavar (headaches and a feeling of hardness in his stomach) worried the doctors. The scans showed no change in his lungs or liver. A month later, he went to Children’s Hospital’s emergency room because of a sharp, jabbing feeling on the right side of his abdomen. This was really the first and only time John ever went to the hospital due to a reaction, and they didn’t even keep h
im. His doctor, Dr. Graves, was doing rounds. He saw John, ruled out pneumonia, and checked his blood work. All was normal.
That winter and spring were busy for John. He was ranking in the top twenty of his class—something that he was very proud of. Scott told me how John used to keep him up past two in the morning, doing his homework. “He would say to me, ‘Dad, I’m really tired tonight. Could you type my paper?’ ”
John spent a lot of time on his senior project about his cancer treatment. Scott recalled that John put all of his energy into it. “He wanted everything so perfect. There were nights he would type a page and ask me to retype it word for word, the way he had it. John would always change a word or two, but he would want to compare the two pages side by side to make sure it was perfect. John got all of his CT scan slides and used them for his presentation. I wasn’t in the room, but from what I was told it was pretty remarkable. He would point at the slides on the screen and show the tumor that was killing him. I talked to Robert Staub, his principal then, and he told me he had to walk out. ‘It was very emotional for me to watch this eighteen-year-old student talk about the cancer that was killing him—like it was nothing. The poise and dignity he showed was remarkable,’ he said. John told me he wanted his senior project to be one teachers would always remember. He must have been right, because I still hear about it today.”
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