September is Childhood Cancer Awareness Month — a time to honor the strength of children and their families navigating the challenges of a cancer diagnosis. Alongside doctors and nurses, Child Life Specialists play a vital role in supporting young patients and their families cope with the emotional and developmental impacts of cancer, guiding them through what can be an overwhelming journey.
In this Q&A, we had the opportunity to speak with Joli Craver, one of our Child Life Specialists at Nemours Children’s Health, who works in the PLAYERS Center for Cancer and Blood Disorders. Joli provided valuable insights for friends, classmates, neighbors, and extended family who are looking to offer meaningful support. Whether it’s knowing what to say, how to help, or simply how to be present, her perspective can help you feel more confident in showing up for children with cancer and their families during their most challenging moments.
What are some meaningful ways people can support a child or family facing a cancer diagnosis beyond financial donations?
My first thought is to try and avoid sharing your opinions or well-meaning advice. The caregiver has so much weight on their shoulders already, and sometimes people think they’re helping by sharing stories of how things were for themselves personally or someone they know. Unless you are asked, I think your thoughts or feelings about what’s going on should be kept to yourself.
Just listening can be very meaningful. When we listen, people feel heard and that can be priceless. Offering to help with siblings, dropping off a meal, or arranging housekeeping or lawn services can also be very welcomed by the family.
How can parents talk to their own children if a classmate, friend, or family member is diagnosed with cancer?
The American Cancer Society’s website has a good list of helpful suggestions that I’ve always followed when asked this question. Here are a few consistent ways to handle inquiries about kids with cancer:
- Be honest and open. Use age-appropriate words and phrases the child will understand and be comfortable with. Speaking truthfully builds trust and gives the child a chance to adjust to changes.
- If you are their caregiver, you know the child better than anyone. Formulate your conversation based on what would resonate with them best. Find a balance between too much information and too little.
- Explain the physical changes they might see (hair loss, weight changes, etc.). Children aren’t used to seeing other children without hair or with a nose tube. It takes a little time for their brain to adjust. Always reinforce that just because someone has cancer, they’re still the same inside; they still like to eat chicken tenders and fries, and they still like to play video games.
- Cancer is not contagious. You can’t “catch” cancer like you can catch pink eye, etc. Explain that you don’t know why they have cancer, but that the doctors know how to take really good care of them.
- Let them ask questions and express their feelings. Honest answers will help them worry less and lower their anxiety. Children of different ages will have different concerns. If you’re unsure about treatment outcomes, telling the child in stages may be helpful.
- A common worry that children have is that they did or didn’t do something that might have caused the illness. Reassure children they couldn’t have caused the cancer — it’s impossible.
What role do Child Life Specialists play in supporting patients and families during cancer treatment?
Child Life Specialists are part of the interdisciplinary healthcare team, and their job is to meet the psychosocial, emotional, and developmental needs of children and adolescents. As you can imagine, the team has many players — physicians, nurses, social workers — and so many more.
Child Life’s role is to help the patient understand and cope with the anxieties and stressors of getting a cancer diagnosis. You can imagine the confusion it brings on children with cancer. Everything is different: Your bedroom is now in a hospital, your body is now being poked and prodded by strangers, your daily life looks totally different. By helping patients [including kids with cancer] confront their fears, learn coping skills for medical procedures and normalize all these new things they are experiencing, a Child Life Specialist can ease some of the psychological trauma. Through play, education, and emotional support, the Child Life Specialist works to ensure the child’s life remains as normal and recognizable as possible.
What local organizations or programs offer hands-on ways for people to help families going through treatment?
We are very fortunate in our community where I serve patients [in Northeast Florida and also Southeast Georgia] to have some awesome organizations and cancer charities to help our families in so many ways. From delivering meals, providing a place to stay, offering family and sibling activities, giving gift cards, and making house payments, these groups genuinely care about patients and their families and truly want to help ease the road they are now traveling. Getting additional assistance is always appreciated.
- Dreams Come True
- Ronald McDonald House of Jacksonville
- The Child Cancer Fund
- The Tom Coughlin Jay Fund Foundation
- V for Victory
What’s one thing you wish more people understood about supporting a child with cancer?
In supporting the child, you are in turn, supporting the family. When a child receives a cancer diagnosis it immediately becomes a “family diagnosis.” Years ago, my son had a game called Domino Rally. The point of the game was to set up the dominos in a path with branches spreading out in various directions. You would watch one single domino that was slightly tipped and watch all the pathways slowly collapse … to the left, to the right. Cancer touches the parent, siblings, grandparents, cousins, and on and on it goes.
Some people may step up and are incredibly helpful while others aren’t sure or confident about what to do, so they pull back. In either case, it changes the dynamics of the children with cancer’s world. All I’m saying is, just be careful and considerate of all adults and children involved. Understanding the pressures these various branches are under will help you be more supportive.
Joli Craver is a hematology/oncology Child Life Specialist with Nemours Children’s Health, Jacksonville in Northeast Florida, part of THE PLAYERS Center for Cancer and Blood Disorders
