After three and a half hard-fought years, never has the ring of a bell meant so much to the Macerou-Paulakonis family. Their son, Benji, pulled the striker and rang an incredible sound aloud at the North Carolina Children’s Hospital to let the world know that he defeated cancer.
The Boy Behind The Bell: Benji Paulakonis
Benji Paulakonis was diagnosed with PH+ Biphenotypic acute lymphoblastic leukemia (BAL) at the age of seven. BAL is a rare form of leukemia that’s cause is unknown and shares many symptoms of other types of leukemia. And BAL occurs more commonly in adults than children, so Benji’s case was extremely rare. The disease can cripple the immune system so severely that patients have to remain hospitalized. The life-expectancy after diagnosis is just a few months in adults, and a few years in children. This is especially true for those that have PH+ BAL which puts the life expectancy for children at just under a year.
Meeting The Paulakonis Family:
We first met Benji and his family at the 2018 Give Gala hosted by Headbands of Hope and The Monday Life. PSI attended the Give Gala after connecting with Headbands of Hope through our partnership at North Carolina Children’s Hospital. Our team fell in love with his positive attitude and exuberance for life. His mother, Francheska Macerou-Fisher, shared her insight into their journey through Benji’s battle.
We spent hours messaging back and forth with Francheska, reading story after story of their journey through this battle. At one point, she spoke about the time that she noticed Benji getting very sick, very fast. Even for a child battling cancer, she knew that this was something else. The doctors told her it was nothing unusual, but after incessantly pleading with doctors and nurses Benji was admitted into the Pediatric Intensive Care Unit (PICU). Shortly after, he went into liver failure. Thanks to her keen eye, he was admitted just in time.
Benji was in a coma for over a week. She stayed by his side every minute, sleeping on a makeshift bed next to his and holding his hand. Francheska recalled the walls of the hospital room spinning from sheer exhaustion. On the eighth day of Benji’s coma, he opened his eyes and said, “Mommy, are you here?” Francheska broke down in tears. This was just one of many episodes in the hospital during Benji’s battle, and all too similar for so many families in the same fight.
“Fight for them and never leave their side”
When asked for any words of advice for families in similar situations, Francheska didn’t hold back. “Be with your family and love with your whole heart. Fight for them and never leave their side. Your positive attitude will make wonders for a child fighting. Show you are strong and invincible because you are. That will tell them that they are also invincible. “
Three and a half years of hospital visits and chemo treatments later, Benji officially won his battle with BAL on January 14th, 2020. While he will continue to receive chemo treatments for his PH+, Benji and his family can rest easier knowing the worst is behind them.
Inspire, and Keep Moving Ahead
Benji’s story serves as an inspiration for children and their loved ones that are fighting cancer every day. And fighting alongside these children are researchers working in clinical trials to one day eradicate these diseases for good.
There are over a thousand pediatric Leukemia clinical trials in the U.S. alone working to develop new methods of treatment that not only improves the standard of living for patients but also get us closer to a cure. While Benji’s story has a happy ending, we are working to make sure stories like his never begin again.
To learn more about Leukemia and the ways you can support those battling through this fight, please visit https://www.lls.org.