Danielle Leach has experienced childhood cancer conversations from both sides. When Leach was in fifth grade, her sister was diagnosed with a form of sarcoma, and she navigated life as a sibling of a childhood cancer survivor. Years later, when Leach’s second son Mason was 3, he was diagnosed with a (non-pLGG) brain tumor. He lived until just after his fifth birthday.
“When Mason was sick, he knew what was going on,” Leach says. “A couple of weeks before he died, he was asking what heaven was like. I had never talked about that to him directly, but he brought it up. It was so important to let him have the space to have the conversations he needed to have.”
Leach’s experiences propelled her into a career in childhood cancer prevention, detection, program development, and advocacy. She’s now a volunteer and parent advocate for the American Childhood Cancer Organization (ACCO). She has also served as chief of government relations and advocacy for the National Brain Tumor Society.
No parent wants to be in the position to have conversations with their child about cancer. But when you’re living the reality of your child’s pLGG diagnosis, you’re their best guide to what’s happening.
Kids’ Common Questions
Every child reacts to a cancer diagnosis in their own way. But Ty Jackson, child life specialist at St. Jude Children’s Research Hospital, says he sees some themes in what kids want to know after finding out they have brain cancer.
“Some of the most common questions I hear kids asking here at the hospital are, ‘What is cancer? How did I get it? Why did I get it? Can I give it to someone else?’” he says.
Jackson also says that because brain tumors can often affect kids’ ability to do their everyday activities, they’re eager to know when they can get back to “normal” and go to school, play sports, or do dance again.
Many of the answers you give your child will feel disappointing or even scary to them. But you can guide them through their concerns with gentle understanding, even while staying honest.
“For caregivers, it's tempting to avoid sharing information in efforts to try to protect the child,” Jackson says. “But [as child life specialists] we know that making sure a child fully understands their diagnosis and why they're at the hospital can lead to positive coping skills.”
Here are some guidelines for helping your child walk through their pLGG journey.
Use your cancer care team.
Your cancer clinic, especially if it’s a pediatric-focused facility, likely has a wealth of resources available to you, so start there. Connect with child life specialists, social workers, and any mental health support available to talk through how to communicate with your child, their siblings, and other family members.
“The goal of a child life specialist is to decrease trauma and anxiety surrounding the hospital environment,” Jackson says. “Often we do that by providing education about a diagnosis or an illness, providing preparation for procedures and other things a child may experience in the hospital environment, and making sure that they feel prepared.”
Meet them at their level.
Your child may do well with only a conversation, but some children learn and process best in other ways, such as reading a book with you or watching a video. Some kids click best with tools they can touch and manipulate.
“I've seen some kids hold a toy brain and feel it, and say ‘Oh, the tumor is in here!’” Leach says. “Visual or tactile (something they can touch) tools can be helpful in that way.”
As you give explanations, use the words they’ll be hearing often, such as “tumor,” and define things in a way they’ll understand.
“The way we describe or teach children about tumors here at the hospital is that it's a group of unhealthy cells that grow in the body and stick together,” Jackson says.
Ground yourself.
The airline guidance holds true as a life metaphor: You need to put on your oxygen mask before helping others with theirs. Talk to your care team, lean on professionals and loved ones, and connect with other families with pLGG. Try not to neglect your own emotions and worries, so you feel better prepared to be a solid, safe space for your child’s questions and reactions.
“Finding an outlet is important because it can feel like you're in a pressure cooker,” Leach says. “And you don’t know when it’s going to end. So find your release valve. What brings you relief?”
Stick with honesty.
Too much information can feel overwhelming, but not enough can lead to anxiety, Jackson says, so work on finding a balance between the two. But above all, don’t avoid answers that feel too hard.
“When you keep information from children, it often leads to misconceptions, especially with younger kids,’” Jackson says. “At that developmental stage, ‘magical thinking’ often leads to things feeling more scary than they are.”
Teens tend to need to explore the really big emotional questions, and parents often feel anxious about how to respond. But it’s OK to say “I don’t know” if it’s the truth.
“In those situations that I encourage caregivers to respond with, ‘I don't have the answer to that question right now, but that's a really great question, and I want you to keep asking those questions,’” Jackson says. “It takes some of the pressure off. You don't have to have all the answers, and you’re teaching them how to find support when they need it.”
Keep siblings part of the team.
Leach says her older son, who was 6 when his brother was diagnosed, didn’t wait long before getting straight to the heart of the matter.
“The first thing he asked was, ‘Is he going to die?’ And I said, ‘It's possible. But the doctors are going to be doing everything, and we are going to be doing everything we can to help that not happen.’”
Her matter-of-fact but gentle honesty had long-lasting effects for her oldest son, who is now 23. “He tells us all the time that part of the reason we have such a good relationship is because we were always honest about what was happening, about what the next steps were.”
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Photo Credit: E+/Getty Images
SOURCES:
Ty Jackson, child life specialist, St. Jude Children’s Research Hospital.
Danielle Leach, volunteer, parent advocate, American Childhood Cancer Organization (ACCO).
