Charlie's Story
In March 2017, just as Charlie was finishing his Fairfield High School varsity hockey season as the goaltender, he visited his pediatrician to address persistent flu-like symptoms. He had been feeling sick for months but had been determined to grind out his final high school season in net. By 11:00am that day he was in the ER at Yale New Haven Children’s Hospital, where the doctors discovered a softball sized tumor lodged between his heart and his lung.
He remained in the hospital for weeks as they put a double port in his chest that was scheduled to remain for 3 years, performed bone marrow and lymph node biopsies, inserted a chest tube to drain the two litres of fluid that had accumulated in his right lung. While there he began what was scheduled to be a 36 month intensive multi agent chemotherapy protocol and never went back to school.
He was ultimately diagnosed with T Lymphoblastic Lymphoma (TLL), a rare and aggressive form of lymphoma. He spent months in the hospital, suffering from multiple life threatening complications. He survived for 5 months on IV nutrition, at points was in a wheelchair, and at 105 lbs was unable to stand or even feed himself.
In April of 2018 he began his climb back to health. He regained 40 lbs, and with extensive physical therapy began to resume some normal life activities. He spent the summer rebuilding and enjoying life, while looking forward to starting college, and even got back out on the ice to coach.
In September 2018 he moved into his dorm room as a freshman at Fairfield University, which he chose because it was one mile from home and only 30 minutes from Yale, where he was still being treated regularly with maintenance chemotherapy.
He was thrilled to have the opportunity to be back to most of the things his peers were doing, but on October 8th after just 4 weeks at school, it was discovered during routine labs at Yale that he had new cancer cells in his spinal fluid and he would need high dose chemotherapy again, followed by a bone marrow transplant. At this point he and his mother, Jenny moved to Boston, to Dana Farber/Boston Children’s Hospital to have access to best care for treatment and transplant.
Charlie was admitted to DFCI/BCH on October 24th, 2018 and he remained inpatient until the end of March, 2019. His new cancer (Acute Myeloid Leukemia – CNS AML) took weeks to properly diagnose, as the doctors at DFCI/BCH (or any of their peer experts at other top hospitals) have rarely seen AML just in the spinal fluid and not in the bone marrow or anywhere else in his body, and he now needed a unique treatment to cover both diseases.
During treatment at BCH he also experienced intense chemotherapy side effects, that confused his doctors just as much as the presentation of his new cancer had. He had severe headaches that lasted for days, constant bone pain, nerve pain, limb numbness, motor control issues, nagging nausea and vomiting, a tongue tremor, and a body that just wasn’t working. He had a feeding tube and although at one point he was paralyzed (his legs completely stopped functioning), he has since learned to walk again. He had countless MRI’s, ultrasounds, EKG’s, EMG’s, bone marrow biopsies, spinal taps, etc. Charlie’s doctors were never able to pinpoint what exactly caused all of his body’s unusually severe responses to treatment.
After treatment Charlie was moved to the Transplant Unit at BCH where he began total body radiation (along with a brain “boost”) and then underwent additional chemotherapy required for Bone Marrow Transplant. He of course continued to keep his doctors on their toes.
His BMT occurred on February 4th, 2019, with his then 18 year old brother Will as his donor. Will also a goalie, played in Charlie’s place, as a senior on their high school team. He forfeited the end of his final hockey season in order to save his brother’s life, and he was honored to do it. He was forced to grow up very quickly, as he was often left as a teenager to care for himself and the family’s home for the better part of two years.
Charlie’s father Anthony made the trip to and from Boston, at points up to 3 times per week. When not in Boston, he was home caring for Will, as well as speaking at events, fundraising, and increasing awareness for charitable cancer organizations including St. Baldrick’s, Relay for Life, and Be The Match.
In March 2019 Charlie was well enough to be transferred to Spaulding Rehabilitation Hospital, where he would stay for a month, re-learning to walk, feed himself, and perform basic functions of daily life. Recovery was hard work, but he was committed to getting back to life.
At the end of April Charlie and his mother returned to CT, and aside from a two week unexpected hospital stay in May, he remained at home in post-transplant isolation until he was finally ready to rejoin the world in November 2019.
After a celebratory holiday season, which included a big fundraiser party at Fairfield Theater Company, as well as a trip to the Winter Classic in Dallas, in January of 2020 Charlie began his freshman year once again at Fairfield University, but was abruptly cut short, along with the rest of the world due to COVID-19 – he did successfully finish his first semester of college via Zoom.
Throughout Charlie’s illnesses and treatment he has always more concerned about other sick children than himself, early on focusing his energy on raising funds via Resilience Gives to provide assistance for families struggling to pay for their medical care, and more recently focusing on fundraising via his own organization, Capalbo Strong.
Charlie’s journey has not been an easy one, and he is eternally thankful for all of the support from family, friends, neighbors, his medical care providers, and even strangers. He is also incredibly grateful to Will for saving his life 2 years ago…they have shared so much their whole lives…they’ve shared a room, they’ve shared their love of hockey, and now they continue to share the same DNA.
Charlie Capalbo is 23 years old. In January 2021 he had just entered his first semester of sophomore year at Fairfield University, when his life came to a screeching halt for the third time in four years.
After months of unexplained chronic and debilitating bone pain, on January 27th, 2021 he was diagnosed with another relapse of CNS AML (Leukemia).
While Charlie is currently in his third battle with this terrible disease, we remain confident he will beat it again. He has his army of supporters from near and far, with hope and love, along with Charlie’s unparalleled determination to win, he cannot and will not lose.
