Nicolle Bengtson, CCLS
Certified Child Life Specialist: Solid Tumors
Texas Children's Hospital Cancer Center

September is childhood cancer awareness month. Over 15,000 children in the United States and 300,000 children globally are diagnosed with cancer each year. (Curesearch) The treatments used to cure or treat their cancer can have many toxic side effects that can cause life-long health issues or cause them to develop chronic health conditions. Nearly 60% of childhood cancer survivors experience severe or life-long complications (Curesearch). Throughout their treatment process they will have to endure a number of difficult medical procedures, countless visits to the hospital, taking harsh medications/treatments, and deal with many physical changes within their bodies. They not only experience difficult physical changes but also experience factors that affect their psychosocial well-being like missing school, losing time with friends or family, missing developmental milestones, and a have loss of independence as many choices are taken away or are made for them.

As Child Life Professionals, we have the resources and tools to provide these children and their families with developmentally appropriate education/preparation, advocate for their varying needs throughout their cancer journey, and to help adjust to their “new normal” as they navigate the hospital system. I have worked as a Certified Child Life Specialist in the Cancer Center for 10 years and have first-hand seen the importance of supporting these children and their families during such a difficult time in their life. There are so many aspects of supporting children with cancer, but one area I think is extremely important is to provide the child and their family with developmentally appropriate diagnosis education focusing on their type of cancer and their personalized treatment plan. It is vital for the child to understand what cancer is and why they have to receive treatment for a prolonged period of time.

Explaining Cancer in a Developmentally Appropriate Way:

When explaining cancer to a child, I first focus on the cell by explaining the healthy cells within our bodies and how they work together to keep us healthy. Then, I transition into explaining cancer and the need to treat it. Here are common terms I utilize in an education and softened phrases I include:

Through my experience providing diagnosis education, I have found it helpful to utilize tools like the Medikin teaching bone, Medikin port doll, and doing a cell demonstration through cut outs or dot art as a visual aid. Addressing misconceptions and providing diagnosis education in general can make a huge impact on the patient and family as they navigate their “new normal” throughout their cancer journey.

Here is a list of other books and resources that I have found to be helpful:

Medikin Bone: This is a teaching tool that can be utilized when educating about the healthy cells within the body as well as the cancer cells . It is also a great visual aide that can make the education more engaging.

Sammie’s New Mask Coloring Book: Sammie’s New Mask is a coloring book that is a great hands-on tool that educates about cancer as well as addresses some of the common questions or misconceptions. I often give this resource to parents to assist in educating siblings, classmates, or friends when they cannot come to the hospital.

Skivolo’s Adventures (Neuroblastoma): Skivolo’s Adventures is a resource for children who have been diagnosed with Neuroblastoma. Portions of the book may be applicable as a teaching aide for to other childhood cancers.

ACCO Free Resources: The American Childhood Cancer Organization has many free resources for children, caregivers, and healthcare providers to spread awareness of childhood cancer including medical play kits, sibling resources, activity books and so much more.

Cure Search: Cure Search is a non-profit organization that provides helpful information and resources in regards to childhood cancer.

Medical play port frogs: Kelsey’s Dream is an organization that provides healthcare providers with stuffed animal frogs that has a port-a-catheter. The Hopper port frog is a great free resource that can provide normalization and education regarding the port-a-catheter.

References:

Curesearch. (n.d.). Curesearch for Children's Cancer. Childhood Cancer Statistics. Retrieved August 30, 2022, from https://curesearch.org/