Help for Pediatric Cancer Patient Caregivers
By Julie Komanetsky, vice president, Patient and Family Services, The National Children’s Cancer Society
By definition, parents are their child’s number one caregiver. However, when that child has cancer, “caregiving” takes on a completely new meaning and many new challenges.
Consider the journey: A child is born, and the proud parents wait for a little cry. They count ten fingers and ten toes and they give thanks for the healthy addition to their family. Cancer is the farthest thought from their minds. After all, cancer is something that happens to adults—not children, or so they think.
The symptoms are different based on the child and the type of cancer, but parents tell us stories of trusting their intuition when their child ends up sick and doesn’t seem to recover after a few days. They push for testing beyond what’s normal. They know something isn’t right. Still, when the doctor walks into the room to tell them that their child has cancer, parents are devastated.
Caregiving Takes on New Meaning
Cancer is a diagnosis that impacts the entire family, oftentimes sending them into a tailspin as they adapt to their new role as cancer patient caregivers. One mom, whose son Zach was diagnosed with rhabdomyosarcoma at age 2, told The National Children’s Cancer Society (NCCS):
“Those first few days after his diagnosis, I couldn’t eat, couldn’t sleep, and couldn’t think. I was afraid he wouldn’t live to see age three.”
Her reaction is common. Parents are faced with the immediate need to learn about their child’s cancer and treatment plan. They are further challenged with maintaining their households, taking care of their other children, missing work and ensuring the family’s financial stability. And one of their most difficult struggles, yet most basic needs, is simply getting their child to and from treatment.
And then they find NCCS. Most often, they are referred by a social worker at the hospital for help with the financial burden of childhood cancer, but soon discover we can also help with their emotional struggles through our Family Support Program.
Supporting Family Caregivers
The NCCS works tirelessly and compassionately to support families making their way through the daunting world of childhood cancer. We know how to navigate this world, helping families get where they need to be—physically, financially, and emotionally—to give them hope, and to give their children the best possible shot at survival.
Our dedicated staff is here to provide practical and emotional support to parents, caregivers and survivors. Once a family is referred to the NCCS, a case manager is assigned to them who stays by their side throughout their cancer journey. Our case managers are trained professionals who help during difficult times, encourage parents to advocate for their child, provide referrals, and perhaps most importantly, they listen when a parent just needs to talk, and they comfort when a parent just needs to cry.
Our support is critical for families like Hazel’s. Hazel is the youngest of four and was diagnosed with leukemia when she was two. She recently turned four years old and continues to receive chemotherapy at a hospital two hours from home during the maintenance phase of her treatment. Hazel’s dad, Nat, recalls the past year as the toughest of his life, describing it as excruciatingly hard for his entire family, as cancer changed their lives entirely but never destroyed their family bond. Nat shares:
“My family is stronger today because of our journey with cancer, and here’s why: people. The people we have met during this process have been unforeseen blessings, providing comfort, support, love and respect at every turn. We have met doctors, nurses, administrative staff, individuals and professionals from all walks of life that helped provide the stilts to prop my family up as we struggled to manage our situation. Some of the most cherished people have been representatives from The National Children’s Cancer Society.”
At The National Children’s Cancer Society, we create a clear path through the maze of childhood cancer and survivorship to help families stay strong, stay positive and stay together. Because no family should have to go through childhood cancer alone.
About the Author
Julie Komanetsky has tirelessly and compassionately served with The National Children’s Cancer Society (NCCS) for more than 20 years. She is currently the Vice President of Patient and Family Services, overseeing all NCCS programs, taking a “no matter what” approach, to create a clear path through the labyrinth of childhood cancer and survivorship to help families stay strong, stay positive and stay together. She is a member of both the Association of Pediatric Oncology Social Workers and the Grant Professionals Association.