JOHNNY'S STORY
Johnny Kinney’s story transcends the mere narrative of a valiant battle against cancer. Yes, the disease cast its long, ominous shadow over him for more than two grueling years starting in November 2020, and until his passing on January 20, 2023. But Johnny was more than the sum of his medical struggles; he was the embodiment of resilience, bravery and courage. A true warrior in every sense of the word.
Since Johnny entered the world on September 4, 2008, born to the loving parents Gayle and John, life was an ongoing adventure without a dull moment. His boundless energy kept him constantly on the move, a trait that didn't diminish even with the arrival of his little sister, Madelin, in July 2010. Together, they formed an inseparable team, creating countless memories as a dynamic duo. Their shared love for putting on "concerts" became a cherished pastime, featuring singing, instrument-playing, and, despite Johnny's questionable dance moves, enthusiastic dancing. In the Kinney household, board games held a significant place, although fair play often took a back seat to the occasional bout of cheating. Whether it was watching sports, enjoying family movie nights, or embarking on aimless car rides, the Kinney’s prioritized spending quality time together. Amidst the shared experiences, laughter was a constant companion in the Kinney household.
On November 30th, 2020, Johnny's mother, Gayle, took him to the orthopedic surgeon's office for a follow-up on persistent knee pain he had been experiencing. Little did they know that this day would mark the shattering of their world. The X-ray revealed a distressing sight - Johnny's femur harbored a mass. The surgeon swiftly identified the ominous presence, and the gravity of the situation became palpable. The journey home from the office was a solemn one, with Johnny tightly holding his mother's hand as they cried together while trying to grapple with the devastating news. The ensuing weeks blurred into a whirlwind of medical consultations with oncologists, pediatric cancer surgeons specializing in orthopedics, a biopsy of the mass, the insertion of a port through surgery, and the fitting of an immobilizing brace enveloping Johnny's entire leg and securing around his waist.
A grim diagnosis emerged: Johnny was battling Osteosarcoma, an exceedingly rare and highly aggressive form of bone cancer. Within a few short weeks of the diagnosis, he commenced a rigorous course of chemotherapy. Over the ensuing year, Johnny faced extended stays at the Valerie Cancer Fund Center/Goryeb Children's Hospital in Morristown, NJ, undergoing relentless rounds of chemotherapy treatments.
During this period, Johnny underwent significant surgeries to try and save his leg. The initial operation was an arduous 17-hour affair, during which surgeons extracted the tibia from Johnny's lower left leg. They fused it with a metal rod and a donor bone, effectively creating a new femur to replace the cancer-afflicted bone. Although the surgery achieved its intended outcome, complications arose concerning veins and blood flow, necessitating three additional major surgeries all within 4 days of each other, in a bid to preserve Johnny's leg. Following the intricate procedures, Johnny spent weeks in the Pediatric Intensive Care Unit (PICU) and an additional week in the main Pediatric Unit before finally returning home. Restricted to a wheelchair and dealing with intense pain, Johnny set up temporary residence in the living room of their house, resting on an air mattress. Fortunately, the excitement of NBA's March Madness provided a welcome distraction, offering the family something to cheer for amid the challenging times.
After enjoying a brief break from his limb-saving surgeries, Johnny resumed chemotherapy a few months later. In November 2021, he received the uplifting news of being declared cancer-free. However, this joy was short-lived. In February 2022, just days before the Kinney family's eagerly anticipated "Johnny Beat Cancer" dream trip, a routine follow-up scan revealed a disheartening reality – the cancer had returned and metastasized to both of Johnny's lungs. Despite a grim survival prognosis, Johnny, fueled by his determination to fight, geared up once more for the battle of his life.
At this juncture, hospice services were enlisted and Johnny became oxygen dependent. This time around, the plan involved surgeries on both lungs and a trial immunotherapy drug, all scheduled at Memorial Sloan Kettering (MSK) in New York. Within days, Johnny underwent the first of two thoracotomy surgeries, encountering complications, yet facing them with his characteristic resilience. After the left thoracotomy, a few weeks later, he underwent the right lung surgery, again navigating through complications with unwavering determination.
While undergoing advanced blood work testing at MSK through their genetics department, the Kinney family discovered that Johnny had Li-Fraumeni Syndrome (LFS), a rare hereditary cancer predisposition syndrome associated with an elevated risk of developing cancer. Given Johnny's early-onset cancer, his likelihood of experiencing a recurrence due to LFS was significantly high. To further assess the familial connection, Gayle, John, and Madelin also underwent genetic testing. Remarkably, all three tested negative for the syndrome, an uncommon outcome given its hereditary nature. The investigation revealed that the genetic mutation leading to LFS occurred during Johnny's prenatal development.
Three weeks after the second thoracotomy, a scan revealed the successful removal of all masses from Johnny's lungs, marking them as "clear." Subsequently, Johnny commenced a grueling immunotherapy treatment regimen, necessitating prolonged stays at MSK hospital, daily injections, frequent check-ups, and medication. The immunotherapy sessions comprised a week with three infusion days and two maintenance days, followed by one week of rest and recovery every three weeks. The drugs used in immunotherapy had a profound impact on the nervous system, causing intense pain.
Following a particularly distressing week of treatments, Johnny returned home, only for Gayle to rush him back to MSK late one evening due to severe stomach pain. Scans, ultrasounds, and an unexpected liver biopsy unveiled another challenge for the Kinney family: Johnny was diagnosed with Primary Sclerosing Cholangitis (PSC), an exceptionally rare disease that attacks the bile ducts in the liver, leading to their dysfunction. A liver transplant was deemed necessary for Johnny's eventual recovery, as there is no alternative treatment for PSC. However, even with a transplant, PSC could potentially resurface, making it a management rather than a curative measure. This would be a topic to be addressed later, following the treatment for the metastasized cancer.
After enduring four months of treatments and various scares, a lung scan was performed to assess the treatment's efficacy. While Johnny and Gayle were in the car, eagerly awaiting the results, the call came in with devastating news – new masses had emerged in both lungs. The rapid growth and size of these masses were alarming, eliminating immunotherapy as a viable option. Undeterred, Johnny, once again holding his mother's hand, allowed themselves a moment to cry before declaring his intention to attend physical therapy, demonstrating his unwavering determination to keep fighting and pressing forward, even in the face of his terminal condition.
During this period, Johnny's care transitioned back to the Valerie Center in Morristown, NJ. He was placed on a trial chemotherapy drug that initially showed promise by slowing the growth of the masses in his lungs for a few months. However, his physical condition deteriorated, and despite his persistent desire to engage in various activities like spending time with family, going out with friends, attending parties, heading to the shore, and going to school, his body gradually began to falter. The chemotherapy drugs, which had once been effective, ceased to work, leading to their discontinuation.
Johnny started missing out on cherished experiences as his body struggled to keep up. Attempts to participate in outings were thwarted by overwhelming pain throughout his entire body. Eventually, he had to stop attending school and seeing friends. A particularly heartbreaking moment in November 2022, was missing his recreation Falcons Football banquet, a significant event where they were retiring his football number, 42. Unfortunately, Johnny was in the hospital at the time for a collapsed lung.
Faced with the critical situation, the oncologist recommended an emergency surgery to attempt to re-inflate the collapsed lung. The prospect of the surgery was daunting, with a significant risk that Johnny might not survive, and even if he did, he could potentially remain intubated for the rest of his life. Despite the risks, Johnny expressed a strong desire for the surgery in the hope that it might prolong his life. True to their unwavering support, Gayle and John allowed Johnny to make the decision.
That night, Johnny underwent the emergency surgery. The surgeon, emotionally moved, informed Gayle, John, and Johnny's Nana that before going under anesthesia, Johnny had asked him if he was going to live because he truly wanted to. Miraculously, Johnny defied the odds once again, making it through the surgery. Upon regaining consciousness, he looked over at his parents and Nana, repeatedly questioning if he was really alive. In yet another incredible feat, Johnny had overcome the challenges before him.
Despite the ongoing struggle, Johnny's body continued to deteriorate and struggled to keep pace. At this juncture, the primary focus shifted to maintaining his comfort and minimizing his pain as much as possible—an immensely challenging task. Not only was he reliant on oxygen, but he was also receiving continuous intravenous pain medication. The days seemed interminably long, and the nights even more so. Gayle, who had been faithfully sleeping in Johnny's room for well over a year, bore witness each night to his painful struggles and ailments.
Despite the challenges, the Kinney family found a small glimmer of light when they were all together for Christmas and New Year's Day—a true Christmas miracle given the earlier doubts from doctors about Johnny's longevity. However, this glimmer faded in mid-January when Johnny had to be urgently rushed to the hospital due to another collapsed lung. His breathing was severely compromised, and the pain he endured made it exceptionally challenging to keep him comfortable.
The following week proved to be the most agonizing for everyone. Witnessing Johnny, who had always been brimming with life and hope, reduced to a state where he could barely talk, breathe or move was profoundly heartbreaking—words scarcely capture the depth of the emotion. Fortunately, amidst the sorrow, Johnny found solace in the presence of some of his dearest individuals—his parents, his sister Madelin, his Nana, Poppy, and his Aunt Tracy. Johnny was admitted to the hospital on a Monday evening and exhibited incredible resilience, putting up his most valiant fight until his passing on Friday morning, January 20, 2023.
Beyond the glimpses offered by posts and articles that chronicled Johnny’s journey, there existed a vibrant, multifaceted individual who left an indelible mark on those fortunate enough to share in his orbit. Johnny's spirit was titanic, his attitude toward life larger than life itself. A fighter through and through, he confronted adversity with a determination that became a beacon for everyone who crossed his path.
It wasn't just the battle scars that defined Johnny but the radiant warmth of his smile, a smile that had the power to infect others with joy. His laughter, a melodic symphony of resilience, echoed long after it left his lips. Johnny wielded an extraordinary sense of humor, a coping mechanism that turned the bleakest moments into shared chuckles, transforming pain into shared camaraderie. Optimism was Johnny's steadfast companion, a companion that refused to waver even when faced with insurmountable odds. His unwavering belief in brighter tomorrows became a testament to the strength of the human spirit. In his brief life with us, Johnny wove a tapestry of memories, threading through the lives of those fortunate enough to know him. Family and friends were Johnny's compass, the guiding stars that illuminated his path. He cherished these connections with an intensity that radiated from him, a testament to the importance he placed on human bonds. His heart, a reservoir of boundless love, poured into everything he undertook. Every gesture, every word, carried the weight of his affection.
Johnny's presence was transformative, a spark that ignited the dormant embers within those around him. He possessed the rare gift of making others feel at home, enveloping them in a sense of belonging. To be in Johnny's company was to experience a sanctuary, a respite from life's storms even though he himself was battling the greatest one. If you were lucky enough to know him, you understood the profound truth behind the notion of feeling "at home" in his presence.
In remembering Johnny, we don't just recount the chapters of his battle against cancer. We celebrate a life lived with unparalleled vigor, an existence that, despite its brevity, left an enduring legacy of laughter, love, and unyielding optimism. Johnny's story extends beyond the confines of illness; it is a narrative of a warrior who, in the face of darkness, illuminated the world with the brilliance of his spirit.
