When a child is diagnosed with a life-threatening disease, a parent’s natural instinct is to quickly establish priorities to provide their child the best treatment possible to insure they survive. Rarely will a parent’s first thought be of the medical bills, family leave options, and the impeding financial toll it will take on their family.
According to a study conducted by researchers at Boston Children’s Cancer and Blood Disorders Center, roughly a third of families struggled with food, housing, or energy insecurity just six months into their child’s cancer treatment. In addition, 56 percent of adults who were the family breadwinners either quit their jobs, were laid off, or took time off within months of their child’s diagnosis. Many families experience a significant loss in income when they leave their jobs to be with a child undergoing treatment. Aside from struggling with mounting medical bills, parents may find it difficult to pay the mortgage, rent, or medical co-pays.
The financial burden can leave behind residual effects long after the disease has released its crippling grip on the family. In particular, long-term financial security, quality of life, and well-being of the entire family, including siblings, may be compromised. Parents who work tirelessly to give their child the best fighting chance may have taught their children a lesson that had been enveloped within the chaos. For some childhood cancer survivors, they arise from bed rest with a sense of maturity and selfless gratitude by mirroring their parents’ altruism.
Lionel is one of these extraordinarily altruistic kids. Lionel was 15 years old when he was diagnosed with lymphoma, a form of childhood cancer that usually requires chemotherapy and radiation therapy. He quickly began treatment, but it was only the beginning of his two-year journey before he would be deemed cancer-free.
“When I was first diagnosed, I didn’t think of the financial burden it could have on my family. I was on my mother’s health insurance, which was able to cover most of the expenses. But it made me wonder what we would have done if it wasn’t covered. There are so many people who aren’t as fortunate and don’t have that security.”
However, there were still co-pays associated with his medical treatment that needed to be covered. A social worker at Memorial Sloan Kettering Cancer Center recommended the non-profit organization Friends of Karen to Lionel’s mother. Friends of Karen was founded in 1978 to help families battling childhood illnesses. They provide financial assistance to help families cover everything from living expenses, car payments, utilities, medical co-pays and doctor’s bills to childcare for siblings, bereavement assistance, and advocacy support.
A social worker also suggested that Lionel apply to Make-A-Wish. At first, he defaulted to the organization’s most popular wish - a trip to Disney World. He thought that because his cancer had affected his entire family who goes through every step of the process with him, a trip would be a way to celebrate closing the cancer chapter in their lives. But when the cancer came back, Lionel’s perspective’s changed.
“It was the second time I was diagnosed - when the lymphoma came back - that I changed my mind. I spent a lot of time in treatment. At one point I was in a hospital room for two months so I had a lot of time to reflect on what really mattered. When they said it was gone, that I was cancer free, I realized I may regret using this once-in-a-lifetime chance on going to Disney World. Instead I thought of it as an opportunity to make a difference.”
Lionel wanted to find a way to let more people know the importance of Friends of Karen. He saw his wish as a way to execute a fundraiser to use the proceeds to help other cancer patients and their families. In granting his wish, Make-A-Wish granted a $10,000 donation to Friends of Karen, along with helping Lionel build awareness, put together a team, and design a website to advertise and fundraise for his cause.
For the last 10 years, Friends of Karen supporters walk in The Long Island Marathon’s 5K to raise crucial funds for the families supported by the program. This year, on April 30, LIONEL’S TEAM will walk alongside Friends of Karen in hopes of raising awareness and funds for thousands of families going through what Lionel and his family did.
“Friends of Karen - the entire organization - restores my faith in people,” Lionel said. “I just want to be a part of that and see how the process works from the inside out. They provide a service for families when they need it most. Figuring out how to cover the finances should definitely be the last thing a parent should have to think about. I don’t like that a parent has to worry about how they are going to pay to keep their child alive.”