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Charlie's Story

Charlie Capalbo passed away on April 24th, 2022 after a five year legendary battle with lymphoma and leukemia.

He was a month shy of his 24th birthday.

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 was 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 in later years  focusing on fundraising via his own organization, Capalbo Strong. 
 
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 relapsed refractory CNS AML (Leukemia), which we all knew was not good.

He spent most of the next 15 months in the hospital in Boston, while making every possible effort to beat his disease one more time. He became paralyzed again in March of 2021, but this time the paralysis covered both legs, as well as his abdominal area.

He did reach a brief (several weeks long) remission, against all odds and all medical professional's opinions, but sadly it didn't last and he began a steep decline in February of 2022.

He was a fierce fighter of his disease. He maxed out every chemo, radiation, and immunotherapy available to him.

Ultimately, his medical team and their peer experts ran out of options for him.

He spent 745 nights in-patient over the five-year period.

He was not afraid to die, and he never complained.

Before he died his family promised him that they would do their part to raise funds for AML research for the rest of their lives, so that someday no child (or adult) has to be told there are no more treatment options.










 

He was a fierce fighter against his disease, getting to remission three times, surviving countless and some rare life-threatening complications.

He maxed out every chemo, radiation, immunotherapy available, and also had a bone marrow transplant in 2019 from his younger brother Will that bought him some good time.

He overcame lower extremity paralysis from treatment twice, relearning to walk both times while at Spaulding Rehabilitation Hospital.

Ultimately his medical team and their peer experts ran out of options for him.

He spent 745 nights in-patient over the five-year period.

He was not afraid to die and never once complained.

Before he died we promised him that we would do our best to raise funds for AML research for the rest of our lives, so that someday no child (or adult) has to be told there are no more treatment options.

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