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Answering the tough questions as a pediatric oncologist

“That must be so sad!”

This is the typical response I get whenever I tell someone I’m a pediatric oncologist. Fortunately, I can tell people that in the world of pediatric cancer, we win a lot more often than we lose. However, this success may be of little immediate comfort to parents who have just learned their child has cancer.

Over the years, patients and their families have entrusted me to guide them through the difficult initial conversations about their cancer, a trust that continues to humble me to this very day. While every conversation is as unique as the child themself, some common questions arise. “Will my child be OK?” “Why did this happen?” “Will all their hair fall out?”

These are tough questions asked by both the child and their family during a time of extreme stress. With so much information communicated during this time, I liken it to trying to take a drink of water from a firehose. Early in my training, I learned it’s critical to gauge where the child and parents are at regarding their ability to understand and process what I’m about to say. If a child is overwhelmed, I answer one question at time and keep it simple, taking my time, minimizing interruptions, and reassuring patients and their families.

During our initial conversations, I tell them that if they remember nothing else, remember three big take home points:

1. Your child is safe and will be OK

In my experience, the uncertainty of what is going on and what will happen next can be debilitating. Reassuring parents that they did the right thing seeking medical attention for their child can help them process what is going on and how to move forward with the cancer diagnosis.

2. The cancer is not your fault

Parents are quick to blame themselves for “not doing something sooner” or “missing the warning signs.” It’s critical to acknowledge the feelings of guilt the parents are experiencing but also to help them understand nothing could have been done differently. To this day, we have not been able to identify a specific risk factor, such as environmental or nutritional, that can explain why children get cancer. While a strong family history of cancer could be a factor, it’s important that parents know that they have no way to control if or when those genetics may contribute to their child developing cancer.

With so much focus on alleviating the parent’s sense of guilt about the situation, we cannot overlook how the child is feeling. Young children can sense something is wrong by seeing the expression on their parents’ faces. Older kids might feel they’ve done something wrong or blame themselves for what their parents are feeling. Reminding the parents to talk to their child and let them know they are safe and did nothing wrong is the most important first step toward healing.

3. Ask for help

Cancer treatment is a marathon, not a sprint. No one can run this race alone, so you really need to ask for help. Asking questions, sometimes repeatedly until they stick, is part of how you ask for help. In my practice, I create a supportive environment where children and their families feel comfortable asking for help, which reminds them that while there is a long road ahead, we will travel it together. While it’s difficult, it’s also important for parents to take care of themselves in order to take care of their child — which may mean asking for support.

How you can help your child

When patients and families think about cancer, losing their hair is often the first thing that comes to mind. More than anything, kids don’t want to feel different. Losing their hair can make them feel isolated from other kids. Whenever I’m asked about hair loss, the first thing I tell the child is that it will grow back! While traumatic, I want patients to know that it will be gradual and that there are many ways to make the transition easier. Wigs and hats are the beginning but certainly not the end. One thing I’ve suggested to families is making this transition into a family event. This could be a girls’ outing to the salon where she can see what her hair looks like short or a boy getting a buzz cut.

As parents, we all share one common wish: That our child will have a bright and happy future. A cancer diagnosis can take that wish to a very dark place. When talking about the future, I’ve found the most important thing to do is give the child and their parents a sincere sense of hope. This comes through reassurance, listening to the concerns and fears the child may have, and allowing them the opportunity to talk about those feelings both in the hospital and at home.

Every day, I’m fortunate enough to help children and their families navigate the emotional roller coaster that is childhood cancer. Their resiliency is inspiring and reminds me just how much good still exists in our world today. Just like a roller coaster, a child’s cancer journey will have its ups and downs. This can cause even the strongest among us to feel drained. It’s during these tough times that I remind myself of my favorite quote written by Maya Angelou. It is my sincere hope with every new challenge families face on the journey to a cure, these words will sustain them: “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”