the ultimate hat trick: charlie capalbo’s unimaginable fight against cancer
Charlie Capalbo circa 2017. Photo Courtesy of David Gunn.
Nobody is ever prepared for their child to be diagnosed with aggressive cancer–three times. We figure it out as we go along because we never know what tomorrow will bring for Charlie. Even while fighting for his life, he’s the most optimistic person and he never, ever complains. As his mom, watching his constant suffering is painful beyond words, but I always believe in him and if he’s not crying, I refuse to cry. Every single day, no matter what difficult thing is happening, we find things to be grateful for, and we laugh–we always, always laugh.
– Jenny Capalbo
To say Charlie Capalbo knows what it means to be grateful is a considerable understatement.
Charlie grew up in Fairfield, CT with his mom Jenny, dad Anthony, and brother Will. He’s spent the majority of his life in the hockey rink and was a star goalie on numerous teams throughout his youth. He’s a good student, an even better friend, and carries a smile with him wherever he goes. His personality is one that’s made up of wit, courage, humor, strength, and compassion. Hockey has followed Charlie every step of the way throughout his illness, and the discipline he picked up from the sport is thought to be at the foundation of his will to fight. We asked those close to Charlie to describe him using one word. Answers included: resilient, selfless, relentless, strong-willed, tenacious, devoted. Today and every day, let us think of Charlie as a reminder that success begins and ends with gratitude and grace.
The Capalbo Family. Photo Courtesy of Laura Fuhr Photography.
In March 2017, Charlie was finishing his senior year of high school and his last varsity hockey season as goaltender. He spent most of the season dealing with persistent flu-like symptoms but was determined to see it through for himself and his team. He had been seen by the walk-in clinic numerous times, yet every test returned negative and no straightforward conclusion surfaced. The day after the state championships, Charlie scheduled a visit with his pediatrician to find the source of his incessant discomfort. He was 18-years-old.
By 11:00 a.m. that day, Charlie was in the Emergency Department at Yale New Haven Children's Hospital, where doctors identified a softball-sized tumor lodged between his heart and lung. The tumor was deemed inoperable, as doctors don’t typically surgically remove lymphoma tumors. Charlie remained in the hospital for weeks. A double-port was installed in his chest, scheduled to stay there for three years. Bone marrow and lymph node biopsies were taken, and a chest tube was inserted to drain the two liters of fluid that had built up in his right lung. He would also begin what was scheduled to be a 36-month intensive multi-agent chemotherapy protocol and never returned to school.
The Capalbo Family with several of Charlie's nurses from BCH at Capalbo Crushed Cancer FTC Warehouse event.
Charlie’s pathology report diagnosed him with T-lymphoblastic Lymphoma (T-LBL), a rare and aggressive form of non-Hodgkin’s lymphoma. The first months spent in the hospital were filled with life-threatening complications; pancreatitis, E. coli, and a blood clot that required six months of twice-daily injections in his legs. He survived for five months on IV nutrition, and at 105 lbs became unable to stand or feed himself. Despite these horrific complications, Charlie never complained. He was focused on getting well, not digging a dangerous pit of sadness and despair to sit in.
Charlie is the most selfless person I’ve met in my entire life. He can be going through the worst of the worst and always have others in mind, wanting the best for them. He also manages to keep a big smile on his face no matter what the situation is. He’s truly one of the strongest and most caring people I know. The definition of resilient. – Tighe Jorgensen
Things began to look up for Charlie in April 2018. He gained 40 lbs and began to resume normal activities with the help of extensive physical therapy. He looked forward to starting college at Fairfield University and was able to get back on the ice to coach. The following September, Charlie moved into his Freshman dorm at Fairfield University, thankfully just 30 minutes from Yale. Charlie was finally being given the opportunity to do what the average 20-year-old should be doing, with the exception of receiving maintenance chemotherapy injected into his spinal fluid.
Unfortunately, normal life didn’t last long for Charlie. On October 8th, 2018, a routine spinal tap revealed new cancer cells in Charlie’s spinal fluid. He would once again need to undergo high-dose chemotherapy followed by a bone marrow transplant to reset his immune system. He and his mother, Jenny, moved to Boston to have access to the best care and treatment at Dana Farber Cancer Institute/Boston Children’s Hospital.
From the moment I first met Charlie, I was in awe of how someone who had battled so much could maintain such a genuinely magnetic personality. Charlie has a way of making everyone around him feel welcome and wanted. He’s battled through more in this life than any person should have to. – Andrew Doane
Charlie and Andrew Doane.
Charlie was admitted to Dana Farber Cancer Institute/Boston Children’s Hospital on October 24th, 2018, and remained inpatient until late March 2019. His lymphoma appeared to have made a linear switch to leukemia. He was formally diagnosed with Isolated CNS AML, which meant that his new Acute Myeloid Leukemia was only in his central nervous system. His proper diagnosis took weeks to reach, as doctors at BCH and peer experts have rarely seen AML isolated in the spinal fluid, not touching bone marrow or any other location in the body. Charlie would now require a unique treatment to cover both diseases.
While undergoing treatment at Boston Children’s Hospital, Charlie experienced intense chemotherapy side effects, quite different from what most expected, including his doctors. Severe headaches that lasted for days, constant bone and nerve pain, limb numbness, motor control issues, nagging nausea and vomiting, a tongue tremor, and leg paralysis left Charlie with a body that was far from functioning as it should have. Needless to say, chemo is a merciless beast.
Watching one of my best friends shake, struggle, and feel incredible amounts of pain, but refuse to tell the nurses he was tired, and instead demand more exercises really reminded me of why Chuck is the only guy I know who could go through this. – Michael Ghiorzi
Friend, Michael Ghiorzi and Charlie.
Once again, Charlie was left to fight an uphill battle, and he did so with grace and gratitude. When doctors and nurses came to administer treatments that were causing his legs to go numb and his head to pound, he thanked them. For Charlie, all of these side effects meant he was on his way to getting better, that alone was worth it. And boy, was it worth it.
Charlie made it into remission, which meant he was ready to begin the process of receiving a bone marrow transplant, giving him a brand new, cancer-free immune system. He was moved to the Stem Cell Transplant Unit at Boston Children’s Hospital and began total body irradiation before undergoing additional chemotherapy required for the transplant. This was to be certain all cancer cells were destroyed before admitting new, healthy cells. On February 4th, 2019, Charlie received his bone marrow transplant from his then 18-year-old brother, Will. An overdue miracle well-deserved, as siblings have only a 25% chance of being a match.
Charlie and brother, Will.
Will has had Charlie’s back throughout his entire journey with cancer. Also a hockey goalie, Will selflessly left his senior year season to save Charlie’s life. He began the preparation process for retrieving bone marrow and was honored to be the one to do so. Will was forced to grow up rather fast in a short period of time and was often left to care for himself and the family’s home for the better part of two years. This situation left Will with a vast opportunity to give up, to feel angry, but he didn't. He was grateful and willing to be the one to give his brother a second chance at leading a normal life.
Will and Charlie Capalbo.
During Charlie’s first diagnosis, I didn’t know what to do. I wasn’t the best supporter I could be and it definitely showed. Then, during his second and third diagnoses, I was able to not only be a better supporter but actually give him something that had chances to make him better. Watching his battle made everything that I could do for him easier than it ever had been. I felt relieved, and I felt a glimpse of hope. – Will Capalbo
In March 2019, Charlie was well enough to have his feeding tube removed and was transferred to Spaulding Rehabilitation Hospital in Charlestown, where he would stay for one-month learning to walk, feed himself, and perform basic everyday tasks. Recovery was hard and sometimes painful, but whenever he was asked if he could do one more step-up or lunge, Charlie’s answer was always the same, “Yes.” At the end of April, Charlie was able to return to Connecticut and remain at home in post-transplant isolation. This included a strict bacteria-free diet and countless rules for his home environment. No contact with pets, and avoiding social contact that wasn’t outdoors, at least six feet apart was crucial to keeping Charlie healthy. In November 2019 Charlie joined the world as a newborn baby would. He began to receive all of his childhood vaccines over again and enjoyed a festive holiday season that included a big fundraiser party and a trip to the Winter Classic in Dallas. In January 2020 Charlie finally began to start his freshman year at Fairfield U, when the ruthless virus that is COVID-19 came to town. He and the rest of the world would go into lockdown and finish the school year via Zoom.
Charlie and Will Capalbo circa 2006.
Whenever I feel overwhelmed, I think about Charlie and what he has done- beyond just beating cancer multiple times. No matter what happens, he’s always fought tooth and nail through all that he’s been through. He always has a plan and an idea of where he wants to be. He’s like family to me. – Joe Casucci
The summer of 2020 was spent with family, knowing that his compromised body would not fare well if infected with COVID-19. In August, Charlie resumed his classes online and was enjoying living outside his home in a rental in-law suite down the street. However, just a few weeks later in early October, he began to experience intense pain in his right shoulder, preventing him from sleeping at night. Reassured by lab results, Charlie’s doctors weren’t concerned with the pain, as his blood work didn’t show any indication of disease, at least not in the way it would for the average patient. The next few months were filled with calls, emails, and visits to doctors to discuss the intense and increasing pain that plagued Charlie’s body. Unfortunately, every doctor came to the same conclusion- Charlie’s blood counts did not indicate a relapse. At home, Charlie visited numerous non-cancer doctors to rule out any non-cancer-related injuries or problems. Charlie left each of those visits with a clean bill of health. However, the pain persisted, and Charlie spent the next few months suffering with what seemed like a chronic pain disorder.
Friends, Tighe Jorgensen and Mike Renzulli visiting Charlie.
Nothing can knock him down, if anything any setback just makes him more willing to fight back and overcome. – Mike Renzulli
While many hoped January 2021 would be a new, happier, and overall healthier year, this did not ring true for Charlie and his family. Jenny’s motherly instincts kicked into high gear and she rather aggressively insisted that more diagnostic procedures be performed at Dana Farber. On January 27th, Charlie went to the hospital for an outpatient bone marrow biopsy and diagnostic lumbar puncture. Thirty minutes after he left the building he was called back into the hospital to learn that Jenny’s intuition had proved correct. Charlie’s unexplained, debilitating bone pain was diagnosed this time as Relapsed Refractory Isolated CNS AML. The pain in his upper body was due to chloromas (clusters of leukemia cells that form a soft tumor) setting up shop, up and down his spinal cord with the nerve endings at the base of his spine coated in leukemia cells.
Charlie had been given all of the chemotherapy drugs that would work for his particular disease. He had also gone through multiple rounds of radiation treatments. He once again became paralyzed, this time from his chest down, which caused treatment to shift in an effort to spare his lungs or heart from permanent damage. With few options left for Charlie, Will was called upon to give him a healthy new batch of lymphocytes to hopefully attack and kill any lurking leukemia cells inside his body. Unfortunately, the testing that was done three weeks after the infusion showed it had little to no impact on the stubborn leukemia cells.
Charlie’s medical team prepared for his transfer to Spaulding Rehabilitation Hospital, knowing he would sadly be discharged while still having cancer. They did, however, need to address one very important issue first. Charlie’s bone marrow hadn’t been functioning since March as a result of all of the harsh treatments, and he could not safely leave the hospital without a proper immune system. The solution? Call in Will for one more donation- this time a stem cell boost. Will prepared by giving himself shots twice a day so his body would make extra cells to give to Charlie. He was of course happy to donate for a third time. During the final weeks of Charlie’s stay, he suffered from numerous bacterial infections and became septic. It was more critical than ever for his body to have some immune cells to fight off the life-threatening infections, but a stem cell boost typically takes three to four weeks to work. However, only ten days post-stem cell infusion, Charlie’s bone marrow began to accept Will’s cells and was working at a record speed. It was the same week Charlie’s doctors discovered that he had pulled off another miracle. On October 29th Charlie’s spinal fluid was finally (and very unexpectedly) clear of cancer cells. Although it will take three clear spinal fluid reports for Charlie to officially be in remission, he has since had a second clear pathology report and he and his family remain hopeful for the next one.
Charlie is currently inpatient at Spaulding Rehabilitation Hospital continuing his recovery and is scheduled to consult with some AML experts at Children’s Hospital of Philadelphia in December for his best options to keep his leukemia away for good. Will is back at school and looking forward to Charlie being home soon, but so far it’s safe to say that the two of them combined were able to pull off the best hat trick of their lives.
Peyton Siegel and Charlie Capalbo.
Charlie is resilient, and miraculous, and brave. He is so much more than his diagnosis and his fight. He is a miracle, and when you’re with him, you can feel the greatness emanate from his humble self. When your heart is breaking for him because of the countless setbacks he’s had to endure, he makes that same heart smile with a crack of a joke. Charlie is a hero. – Peyton Siegel
In classic Charlie fashion, he has always been more concerned about other sick children than for himself. He has made strong bonds and connections with families and patients struggling with this treacherous disease. Because of this, Charlie has also experienced the loss of some friends who could no longer fight an uphill battle. Early on in Charlie’s illness, he focused his energy on raising funds via Resilience Gives to provide assistance to families struggling to pay for medical care and more recently has concentrated on fundraising via his own organization, Capalbo Strong. He is incredibly grateful to his brother Will for saving his life two-and-half years ago, and for his continued contribution to his recovery. Ironically, they have shared so much throughout their lives; their room, their love of hockey, and now the same DNA.
Peyton Siegel and Charlie Capalbo.
Charlie’s mom, Jenny recalls, “Charlie’s disease is definitely a beast, but he is tougher and stronger because of his extraordinary army of supporters from near and far.”
Lawn Signs Throughout Fairfield County.
It’s been an incredibly challenging road but I'm so grateful for all my family, friends, neighbors, the hockey community, all of my doctors and nurses, and even complete strangers, that now feel like family, that have helped me get to this point in my recovery. It really does take an army and I’m so lucky that my army is huge. – Charlie Capalbo
Charlie and friends at Capalbo Crushed Cancer FTC Warehouse Event: (front) Tighe Jorgensen, Charlie Capalbo, Mike Renzulli, (back) Will Capalbo, Edwin Leon, Ryan Gove, Mike Randazzo, Michael Ghiorzi, Matt Clarkin, Jack McGuire, Joe Casucci.
Hockey for Charlie is like soil and water to the earth. It’s the foundation of who he is, and he can’t thrive properly without it. Throughout the streets of Fairfield County and all over Connecticut you can find hockey sticks littering the front porches of houses in support of Charlie and his incredible will to keep on fighting.
When Charlie’s friends were asked to contribute to this article about their friend, the response was instinctively the same: “Anything for Chuck.”
Charlie leaving Boston Children's Hospital, November 11th, 2021.
I believe everyone has a cross to bear. Why Charlie has been given one as heavy as this, I do not know. As a writer, I hope I have done Charlie’s story justice, and am honored and privileged to be given the opportunity to tell one as incredible as his. – Sophia Gabriel
To Charlie’s family, the Rhone team stands with you always, and we are thinking of Charlie every day. #capalbostrong
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