Childhood Cancer and Everyday Heroes
Parents whose children are fighting cancer are heroes. You can be one too.
Most days, we find ourselves moving through our familiar routines. We get our kids to school, present a proposal at a meeting, meet some friends at the gym, grab groceries, put a meal on the dinner table, and run a load of laundry for the shirt that must be worn to school the next day. We try to do our best, and we make choices that can seem ordinary but are quietly heroic.
It can be difficult to imagine that in addition to these efforts, some parents must add yet another heroic action to their day—taking their child to a chemotherapy appointment.
The parents who come into the St. Jude Affiliate Clinic are the heroes who live in your neighborhood, pass you in the carpool, shop at your store, or sit at the table next to yours at your favorite restaurant. When I see them in the office, these parents may be wearing business suits, sweatpants, high heels or sneakers. The commonality among them? None ever expected their entire world to be torn apart because their child developed cancer.
The C Word
The C word . . . we fear it. Even if it has not affected us personally, we are aware of its presence in our lives and can’t believe that such an ugly thing exists.
Pediatric cancer affects families of all incomes, ethnicities and beliefs. Almost 16,000 children this year will be diagnosed with cancer in our country. In the modern era, pediatric cancer has more than an 80 percent chance of being cured. That cure rate is both hopeful and alarming at the same time, because a fight against childhood cancer is an all or nothing battle. There is no second place, and survival rates can vary greatly based upon such factors as the child’s age, the type of cancer or the stage of the cancer.
Although cancer is horrific, we must remember that pediatric cancer cure rates continue to rise because clinical research has steadily provided better treatment options. Even some of the most devastating diseases, such as Stage 4 neuroblastoma, are now treatable because of the efforts of oncologists, researchers, parents and patients.
Cancer treatments may now include combinations of chemotherapy, radiation therapy, surgery, immunotherapy and drugs that target small molecules. Researchers are also working to understand the genetic code of a patient’s cancer so that we can safely overcome even the most resistant cancer cell, while simultaneously decreasing the severity of side effects. These breakthroughs are possible through collaborative efforts of medical teams and researchers all across the world, because we share the common goal of finding a cure for every child with cancer.
Increasing awareness of pediatric cancer allows our community to support vital research and provide timely access to medical care. Recognizing that pediatric cancer can affect anyone also encourages us to reach out to those families who are deep in treatment, to lift them up and help them persevere.
Rather than cover our eyes and hope the dreaded “C word” will somehow pass by us, we must be as brave as the children and their parents who confront cancer on a daily basis.
Talking About Childhood Cancer
You may find that pediatric cancer becomes a topic of discussion because of a schoolmate, a neighbor or a relative. There is no single right way to talk about cancer, so the first step is being willing to have a dialogue. If you accept that there will be awkward moments in the conversation, then those moments are easier to navigate. Even acknowledging your embarrassment can put the other person at ease. Once your family and friends realize that they have a safe space in which to talk, these difficult conversations can be incredibly rewarding.
When talking to a child, breaking down scary terms into more familiar concepts can help a child cope with what they are inevitably hearing. The words you use depend greatly on the individual’s developmental stage and past experiences. Sometimes we have to disassociate from our preconceptions of medical terms like cancer, tumor, mass, benign and malignant, and use the words to best explain the situation.
When talking to the elementary school child, I may describe cancer cells as a new lump inside the body that is not normal and shouldn’t be there, like a weed in a garden. Those cancer cells have become mean or stupid, and they don’t know they are supposed to stop growing, so the doctors may have to use surgery or medicines (pulling the weeds or spraying with weed killer) to get rid of the cancer cells before they cause more problems.
For an older child who has become versed in technology, I may explain that the program or code of the cells is no longer working properly and the cell has become programmed to grow out of control. Even for adults, it is sometimes important to remind ourselves that the cancer is not contagious, the child did not “do” anything to become at risk, and there are treatment options to offer hope for a cure.
These examples are just the tip of the iceberg when it comes to talking about cancer. It’s important to note that kids can come up with great questions. My best advice is to ultimately be honest in your answers, even if that means saying, “I don’t know.” Many answers are still out of reach for any of us. Honesty also means that we should only make promises that we can keep. We can’t always promise that everything will be all right, but we can promise our everlasting love for our children that will endure far beyond a diagnosis of cancer.
Don’t let cancer hide itself because we don't want it to exist. As just one of many health issues we have to face, it’s OK to talk about cancer so that we can ultimately defeat it.
While some people shy away from hematology and oncology, Dr. Jessica Bell feels called to the field. She supports children and their families on their cancer journeys. Dr. Bell has been a part of St. Jude Affiliate Clinic at Novant Health Hemby Children's Hospital since 2008.