This past swim season was a powerful year for Jon. His Dad was diagnosed with cancer 1-2 years previously, and at the start of the season his dad was going through yet again several rounds of chemotherapy. His father eventually passed away in July 2013, 4 days after seeing Jon make his first YMCA National time standard!
When the 2012-13 season started, Jon was 13 and in the eighth grade, he was a swimmer who had never qualified to attend any NC 14&Under Championship Meet at any age level…despite this he registered for our highest level group, the National Team, which placed swimmers on track to compete at YMCA Long Course Nationals. Jon’s consistent and study work ethic elevated him quickly to the top half of our new group. At our December championship meet he qualified for NC 14&Under Championships in all of his main events and in July at Tar Heel States he was able to qualify for YMCA Nationals in Atlanta, Ga. Jon stayed home that meet, and on July 31st, while his teammates were in Atlanta, the only Championship level meet he did not attend, Jon’s father passed away.
This young man had the highest practice attendance percentage on the team, at any level, and was voted by his peers to win our annual Senior Award, almost unanimously. He also earned the Poseidon Award at NC Open Water Champs, broke a team record in the 800-meter freestyle, and overall became the spirit of our team in what was arguably one of our best seasons in our 40-plus year history. When we started this season, many would have said that being on the National Team and achieving a YMCA National time cut would have been unrealistic expectations for Jon, and maybe they were…but Jon’s heart and sole were poured into his swimming. He used the sport and our team to channel his emotions into something positive, and the results were truly inspiring and has affected us all. We became more than a team this season, and it culminated August 10th when coaches, teammates, family, co-workers, and friends all joined together at Jon’s father’s Celebration of Life ceremony.
I asked Karen, Jon’s mother, if she could write down a few things about this past year with Jon and the many obstacles the family faced.
“My husband, Kevin, was diagnosed 3 years ago with an extremely rare and extremely aggressive form of small cell prostate cancer. We were at the beach for the annual family vacation when Kevin got sick. Kevin and I left the beach early, leaving Jon for what would become the first of many times, to seek medical help for Kevin. It took six weeks to figure out what type of cancer Kevin had because it was so rare. The only symptoms, looking back, that Kevin ever experienced were fatigue and an intermittent dry cough. By the time he was diagnosed, it had already spread to his lungs, his lymph system and the bone. At the age of 11, Jon learned that his dad had cancer and that it was not curable. We could not even tell him how long Kevin had because we didn’t know. We were told anywhere from 6 months to 3 years but most likely he would not live out the year. In a split second, all three of our lives were forever altered.
We decided immediately as a family that we were not going to face this disease as victims. I remember Jon asking my husband “why you Dad? You don’t smoke, you exercise and you eat healthy.” My husband replied “Why not me, son? No one deserves cancer and getting sick is not about retribution.” Jon and I got used to hearing his dad say over and over “it is what it is…we have to deal with it and move on.” He also stressed finding the positive in every single day. Each one of us had to find our own way of “living life” in the face of what this diagnosis meant. Quite a tall order for an adult, let alone a child of 11. Jon chose to do this through swimming.
Kevin had surgery to remove part of the primary tumor and faced complications…he ended up in the hospital for a week and Jon was shuffled from one house to another while we were at Duke. Kevin then faced 15 rounds of chemo (again at Duke). Chemo caused him to lose his hair and caused extreme fatigue and joint and bone pain. Jon had to deal with watching his dad go from being a very robust, energetic and active dad to a dad who now was lucky if he had the energy to sit on the side lines. Jon also had to deal with being sent to friends’ homes every three weeks for one to two nights depending on how Kevin did with the chemo. We tried to spread this around so as not to overburden our friends but this meant every three weeks
Jon went somewhere new. Jon never once complained. During the first year Kevin was hospitalized three times for about a week each time, and again we had to find somewhere for Jon to go.
The world of swimming was an unfamiliar one to Kevin, but Jon patiently explained it all to Kevin. Swimming gave all three of us an “out” that we could share together, forget cancer for awhile and just rejoice in Jon’s success. Jon poured himself into swimming and quickly moved from senior prep to senior to national. While Kevin continued to work no matter what, Jon continued to work hard at swimming no matter what while maintaining grades at an advanced school for the gifted. Once Kevin finished his 15 rounds of chemo, he actually was able to stop chemo for about 10 months. During this time, he made many of Jon’s meets and learned more and more about swimming.
Last fall, the cancer became active again. Jon had to face starting chemo all over again while at the same time facing a very challenging school year. He again chose to pour his energy into swimming. Kevin started chemo for a second time but it was clear that it wasn’t working. In February of this past year, Kevin was diagnosed with a brain tumor. He was admitted for surgery and spent a week at Duke. He then underwent radiation treatment. Kevin had to be stop all chemo in order for them to do the surgery; unfortunately this gave the cancer a chance to spread to his liver and intestines. He became extremely nauseated and unable to eat and was again hospitalized. This time he came home unable to care for himself, unable to walk without a walker and assistance, and unable to do stairs by himself. I stopped working and Jon learned to help his dad walk with a walker, to help him up the stairs, to take turns with me to stay with Kevin so he wouldn’t be alone, to help him go from sitting to standing when he was too weak or in too much bone pain to stand. He learned how to make his dad smoothies so we could try and get calories in him. He watched his dad lose 60 pounds in three months, and endured three more unplanned emergency hospitalizations. They tried one more last chance chemo with Kevin this spring, which did not impact the cancer much but did cause hearing loss and worsen his balance and his ability to eat. Finally, in May, Kevin decided to stop all treatment. I sat down with Jon and told him what his dad had decided and together the three of us talked about how we wanted to handle things. Jon said “I want my dad at home as long as he isn’t in pain.” We made the decision as a family to bring in hospice so Jon then had to get used to nurses and social workers as well as the chaplain being in his home several times a week. He watched his dad get weaker and weaker and continue to lose weight. Kevin could no longer attend the swim meets so we videotaped his swims so Kevin could see them.
The last week in June, we took our annual family beach trip again…Kevin slept most of the trip and was occasionally confused. Jon was so patient with him and seemed to instinctively know how to calm Kevin and how to deal with his confusion. The night we returned from the beach, Kevin’s dad fell down the stairs. We had to call 911 and Jon handled the phone call so I could attend to Kevin. He calmly moved both cars out of the driveway so the ambulance could get in. He rode with me and stayed with me and his dad in the emergency room, even getting his dad to joke around with him. Kevin was hospitalized 9 days this time. Jon and his friends came to visit and on July 4th even helped bring in a picnic and a beer for his dad.
Kevin obviously could no longer climb stairs, so Jon and his buddy moved our bed down stairs into the living room. Kevin lived four more weeks in our living room. Jon sat with his dad every single day and talked with him, joked with him, and updated him on what was going on with swimming. Kevin knew Jon was trying to get a Y national cut before the end of the season. We all knew it was a major long shot. Kevin went from walking with a walker, to using a wheelchair to eventually being bed bound. One of Jon’s favorite pictures is of his dad trying to eat pancakes with Jon at the table about three weeks before Kevin died.
The last week of his life, Kevin was no longer able to verbally communicate. Jon would still visit with him and show him videos of his swimming. The night Jon got his Y national cut, Kevin couldn’t stop smiling. The next day, Jon showed his dad his jersey. Kevin reached out, took Jon’s hand in his and was trying to talk. He was trying to tell him he was proud of him and that he loved him. His eyes were bright, his smile was huge and he had tears streaming down his face.
The day before Kevin passed, we had to move him to Beacon Place…we could no longer control the pain at home. Jon watched them as they took his dad in an ambulance and then rode with me to the facility. He stayed for awhile and then left to go to swim practice. He wouldn’t see his father alive again…Kevin passed at 5:20 am the next morning. The hardest thing I ever had to do was to tell Jon his dad had died. Jon was so proud of his dad for being an organ donor and for also donating his body to research.
Through it all, Jon swam. I remember him telling me one time that the only time he didn’t think about his dad and cancer was when he was in the pool. He could fully immerse himself in swimming and be free of it for awhile. When Kevin stopped all treatment, Jon started doubles that day and did doubles every day they were offered until Kevin passed. He even found a pool while we were at the beach and swam almost every day and did dry land as well. So many well meaning friends and family kept telling me I was crazy to keep up the swim schedule – practices at 5:30 am, practices again at night, 4 day meets that Jon swam every single day, etc. What they didn’t understand is that swimming is what saved Jon…and in many ways, one of the activities that allowed us to remain just a normal family – watching their son, cheering him and spending time together. I knew in my heart that I had to make sure Jon got to practices and kept swimming if he was going to make it through experience. He never even missed practices when Kevin was hospitalized all those times…we found rides for him every day. I know that swimming is what will bring both of us through this next part of learning how to live without Kevin. When Jon went to his first practice after being off for a week, he told me he was never so happy to see the Y. I can only say thank God for swimming.”