For Charlie Capalbo, the fight goes on
Updated 11:48 am, Tuesday, October 17, 2017
FAIRFIELD — The large three-liter IV bag lay flat on the countertop in the middle of the Capalbo family kitchen. It was a caloric supplement, much like baby formula, called TPN, or in medical terms, total parenteral nutrition. It is an intravenous way of feeding that bypasses the gastrointestinal tract when a person is unable to eat by mouth.
It has been Charlie Capablo’s main source of food for over the past month.
It takes 12 hours for the IV bag to empty itself, through a port in Charlie’s chest. This takes place in the evening, right before he goes to bed.
And while it can be uncomfortable, it’s nothing compared to the discomfort Capalbo has endured over the last seven months when he was first diagnosed with non-Hodgkin lymphoblastic lymphoma T-cell Stage 3 cancer in March, just after he finished playing for the Fairfield co-op hockey team in the state tournament.
First came a 28-day treatment phase called ‘induction.’ Next, another 28-day treatment phase called ‘consolidation.’ Next came a third phase called ‘intermaintinence’ which Capalbo just recently finished — but not without spending an agonizing summer in and out of the hospital, several times fighting for his life.
Courage? You bet Charlie Capalbo has courage. On Monday, he will receive the 2017 Chelsea Cohen Courage Award from the Fairfield County Sports Commission, a deserving honoree if ever there was one.
Last week, Charlie felt well enough to talk with Hearst Connecticut Media about his ongoing fight against cancer.
“Today is a good day,” he said, sitting in a comfortable chair in the family kitchen. “I’m feeling pretty good. About a week and a half ago, I started feeling better.”
Thanks in part to that massive TPN IV bag. From a low weight of 110 pounds, Capalbo is now up to around 135 pounds. His hair — which he lost during the second round of chemo treatments — is growing back, but he’ll likely lose it again during this first intermaintinece phase. Occasionally he feels good enough to eat real food, the egg and cheese croissant, from the ‘Wich Day shop at the corner of South Benson Road, his favorite.
“He’s come a long way,” Charlie’s mom, Jennifer, said. “If you’d had come here a month ago, you would have seen Charlie in a wheelchair, barely able to walk.”
As bad as the first two round of chemotherapy was for Charlie, this third round, in which a drug called methotrexate was used, caused Capalbo’s body to start breaking down. He developed pancreatic cysts, he developed E. coli, he developed mucositis — in which the mucous membranes that line the digestive tract become inflamed and bleed.
“Pancreatitis can be fatal, I don’t know how close you can say he came to death, but certainly he was in very serious condition,” Jennifer said. “He was in and out of the ICU with all kinds of side effects.”
Charlie’s father, Anthony, said Charlie went into the hospital for the first time around Mother’s Day and didn’t return home until June 29. Then came another three-week stay as the doctors worked to determine that the methotrexate was the cause of the side effects.
“There were a lot of residual problems from that (medicine),” Jennifer said. “He got pancreatitis, that came during the consolidation phase. He went back into the hospital in septic shock because he had E. coli and they were giving him antibiotics but he wasn’t getting better. That (methotrexate) nearly killed him. They stopped giving him that medicine.”
And because of all these side effects, Capalbo also developed a blood clot and must take daily shots in the morning and at night.
“A lot of stuff has happened,” Jennifer said. “A lot.”
But there is also promising news. The tumor, located between Charlie’s heart and his right lung, is steadily shrinking. The cancer in the tumor, according to the doctors, is gone.
“They looked at it after (a hockey jamboree in April at the Wonderland of Ice to benefit Charlie) and they said, ‘It’s gone’ … the cancer’s gone. The tumor’s still there but the cancer’s gone.”
“The tumor will eventually melt away,” Jennifer said. “But the cancer is such an aggressive cancer that if they stop treatment it would come back.”
Hence, the first ‘intermaintience’ phase, a 64-day process using the same current chemo drugs, but administered daily in smaller doses. The phase started two weeks ago and will end in late November. After that comes ‘IM2,’ another 64-day program. But once that is over …
“We’ll be done,” Jennifer said. “No more in-patient. Then we go to where he could lead a normal life. Go out and live. His hair will grow back. He should be building muscle again, being able to skate again. He should be able to go to college.”
Before the diagnosis, Charlie had taken a couple of college visits and was interested in business and architecture.
“We’re getting ready to start the college (application process) again,” Charlie said. “I like psychology. It’s Interesting. Business classes. Architecture is pretty cool. I haven’t taken any classes on that but it was one of my internship choices.”
As his health continues to improve, Charlie is able to do things that just a month or two ago would have been impossible. He and his brother Will will walk the family dogs, Henry and George. Charlie can ride his bicycle and, even better, can drive the car.
“I have to pinch myself that he can ride his bike down the street,” Jennifer said. “The first time he drove the car, it was so weird …”
“I almost called the cops,” added Anthony.
Charlie just smiles.
“It’s good to be home,” he said.
Not too long ago, Charlie and his family went to the Webster Bank Arena to watch Charlie’s favorite NHL team, the New York Rangers, play the New York Islanders in an exhibition game.
“We ended up in a skybox. It was cool,” Charlie said.