On March 8, 2022 our lives changed forever when we lost our son Charlie after a courageous two-and-a half-year battle with Ewing Sarcoma, a rare pediatric cancer that affects 350 kids yearly. There are no words to describe the unimaginable loss and bewilderment we feel over losing Charlie. There are simply no words, yet, there is so much to say.
To know Charlie was to love him. Often people would comment on his million-dollar mega-watt smile. As a little boy, he exuded such a zest, playfulness and joy for life. As a teenager, his sense of humor, his warmth and his energy were always buzzing. He was happy and fun to be around. He had a bright future and so much good ahead of him.
Charlie was a lover of all sports, Soccer, Basketball, Paddle, Skiing and Swimming just to name a few. But he found his true love in Baseball. Charlie’s love of the game grew and became his passion. His love for pitching meant the world to him. Throughout his treatment, no challenge was insurmountable if it meant he would have the opportunity to get back on the mound, competing with his teammates.
Charlie was diagnosed in 2019 after suffering unexplained persistent back pain often felt after a day of pitching on his Middle School and travel baseball teams. The pain would come and go but by the spring of that year and after numerous visits to his pediatrician and chiropractor, and acupuncture and physical therapy appointments, the pain wouldn’t subside.
One evening in June of that summer, Charlie awoke to excruciating pain in his lower back which prompted an emergency visit to a Sports Medicine Doctor for an x-ray, which revealed a large tumor in his sacrum/pelvic area.
To say we were shocked is an understatement, yet the news that followed later that day after a biopsy procedure brought us to our knees. Our 13-year-old son was diagnosed with a blue cell tumor called Ewing Sarcoma, a rare pediatric cancer, located in his pelvic bone and surrounding soft tissue.
And that wasn’t the worst of it. A CT scan and an MRI further revealed that the tumor had metastasized to his lungs.
It felt like the floor gave way as we sat numb and listened to the year-long treatment protocol plan of dual chemotherapy and proton radiation therapy that stood in front of Charlie. His life and ours were turned upside down. Despite this, we felt so grateful for the compassion and grace provided by the Oncology Doctors at Hackensack University Medical Center followed by our Sarcoma Team at Memorial Sloan Kettering who became like family to us
Charlie mowed down his treatments like an absolute champion. When fevers struck he was hospitalized and received several plasma and blood transfusions along the way. He rarely complained, carried on with dignity, and often with a fierce sense of humor. MSK Kids became our second home. The chemo nurses, Nurse Practitioners and Doctors became the faces we saw most, giving us confidence and comfort as they ushered Charlie on the road to recovery.
Charlie joyfully rang the bell signifying the end of treatment in late August of 2020. In September, after scans revealed No Evidence of Disease, we heard the word “remission.” To say we were grateful, exhausted and relieved barely scratches the surface of how thankful we felt to have gotten through the battle of his life. Having kicked cancer to the curb, we were elated to finally have Charlie see this in his rear-view mirror.
Normal life resumed as much as normalcy could during the simultaneous tidal wave of the Covid-19 pandemic. From the moment Charlie began treatment and through to the finish, we did not speak words like recurrence. We heard repeatedly that sarcomas were squirrely and tough to treat, as they often lie dormant only to reappear again. We squashed these fears as soon as they surfaced, too terrified to consider them.
And Charlie was healthy again. Charlie had beat it.
Less than four months later, we had the profound pleasure of ringing in the New Year amongst close friends on the slopes of Vermont. 2021 was a celebration for many reasons. Our family collectively exhaled, as this new year offered the hope of a return to our lives. We watched Charlie ski again and navigate his freshman year of high school alongside his friends and classmates. He was finding his groove and getting on with his life.
Two weeks later, disaster struck. Late one night Charlie suffered a seizure which necessitated an ambulatory transport to HUMC. To our complete heartbreak, we learned Charlie’s cancer had returned to his brain with two spots in his frontal lobe.
In what felt like an instant, January morphed into a return to battle. Once again, we would have to familiarize ourselves with the cancer world, a world we had been so happy to leave behind.
Radiation effectively treated the lesions in his brain. However, we were told to expect more flare ups, more spots at any time. Due to the timing of the recurrence, Charlie’s doctors explained it would be difficult to treat, and in this situation, patients chart their own path with no set protocol in place for Recurring Ewing Sarcoma.
Sadly, this was true for Charlie. Charlie underwent more chemotherapy and when that proved to be unsuccessful, trials were explored and as well as a Phase 1 CAR T cell immunotherapy treatment at Seattle Children’s Hospital. We were hopeful as this seemed promising.
It proved otherwise.
Charlie succumbed to Ewing’s shortly after our return from Seattle. He died peacefully at MSK, surrounded by family and his amazing team of Doctors and Nurses.
While everything was done to extend Charlie’s life through chemotherapy, immunotherapy and investigational trials, patients who relapse, or do not respond to existing protocols, are in critical need of new research trials and therapies. For these patients it’s a race against the clock. It’s a race for a cure. We need effective, curative therapies for better outcomes. No one should have to go through what Charlie had to go through. We need to strike out Ewing’s for Charlie and for the many children and adolescent patients dealing with this deadly disease.
The unbelievable loss of Charlie has left a hole in our hearts that will never mend. Selfishly, we wanted more time with him but our faith has given us the strength to know that God has bigger plans for Charlie. He will continue to be with us in spirit and has so much more to accomplish. Without a doubt he will continue to watch over us and will be with us in everything we do in his honor. Through his Foundation, his lasting legacy of strength, perseverance, courage, and compassion for others, will guide us as he helps those affected by Ewing Sarcoma.