Mile #105 Charlie
Charlie Capalbo – TLL and CNS AML
In March 2017, just as then 18-year old Charlie was finishing his Fairfield varsity hockey season as the goaltender, he visited his pediatrician to address nagging 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 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 five 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.
In September he moved into his dorm room as a freshman at Fairfield University, which he chose because it was one mile from our 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 we made the move to Dana Farber/Boston Children’s Hospital to have access to best care possible.
His new cancer (CNS AML/Acute Myeloid Leukemia) took weeks to properly diagnose, as the doctors at DFCI/BCH (or any of their peer experts at other top hospitals) have never seen AML just in the spinal fluid and not in the bone marrow, and he would now need a unique treatment to cover both diseases.
Charlie was admitted to DFCI/BCH on October 24th and he has remained inpatient since, with an expected discharge sometime in the spring, followed by a 6 month period of in-home isolation. Over the last several months he’s experienced intense side effects that have confused his doctors just as much as the presentation of his new cancer has. He’s 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 isn’t working. He has a feeding tube and legs that are no longer functional. He’s had countless MRI’s, ultrasounds, EKG’s, EMG’s, bone marrow biopsies, spinal taps, etc. Still his doctors are unable to pinpoint what exactly is causing his body to continue to fail him, because his disease and response to treatment is so unusual.
Even with all of the challenges he’s faced, he never complains. Ever. He remains hopeful and positive and when he’s having a really bad day, he just gets very quiet so that he can focus on better days ahead.
Now 20 years old, Charlie has begun radiation and additional chemotherapy required for bone marrow transplant. His BMT is scheduled for February 4th, with his younger brother Will as his donor! Will is also a goalie, playing in Charlie’s place, as a senior on their high school team. He will have to miss the end of his season in order to save his brother’s life, and he’s proud and beyond happy to do it.