“Because of the physical changes some kids have undergone, such as hair loss or nasogastric tubes, they worry they won’t be accepted or that they will be teased,” said Fred Hutch proton therapy child life specialist, Erin Behen, MS, CCLS. “The older ones also have the added pressure to keep up with school. There can be sadness over not being able to fully do the things they used to, such as sports.”
Parents, too, may worry about germs if their child is still in treatment or their immune system is still recovering.
Fred Hutch’s child life specialists and social workers, who partner with families to make the transition as smooth as possible, have resources that can help.
Social workers can help families gain access to plans that provide accommodations through Individualized Education Programs (IEPs) or 504 Plans, which are designed to support students with disabilities. These formalized agreements outline what the school and teachers will do to help meet children’s specific needs.
“We often meet with families to discuss individual concerns and create plans or goals,” said Behen. “How much school can they handle? Should they start with half a day or have the option to take a nap in the nurse’s office? How can they engage with their peers in activities? How can schools or families prepare the classmates for the child’s return?”
Getting a child to open up about their concerns can also be tricky, so child life specialists and social workers create ways to make kids comfortable.
Once they understand a child’s biggest concerns, specialists can tailor a school re-entry plan for them. It’s not a one-size-fits-all approach, as patients often have differing opinions or comfort levels regarding how much they want to share with others.
“I recently spoke to a 13-year-old who hadn’t opened up to anyone on the care team for the first month,” said Behen. “We happened to get on the topic of [the video game series] Zelda, and we talked for 20 minutes or so. His mother said it was the most he’s talked for a long time. We discovered his sadness over not being able to play football in the fall. Now we can try to figure out what we can do to help.”
Besides accommodations, there are also programs and resources designed especially for elementary school-aged children.
Behen likes one in particular called Monkey in My Chair, which provides resources to teachers and tools to keep the patient connected with their classmates during their absence. It centers on a large stuffed monkey that they take ownership of, bringing it to classes and recess and letting it take the seat of the missing patient.
“Programs such as this help classmates understand what is happening with their friend and also keep that child top of mind,” Behen said.
Seattle’s Cancer Pathways has a program called Cancer Happens that educators can use to help kids learn how to reduce their own cancer risk while making healthy lifestyle choices such as not smoking or vaping.
It also teaches how to support those that who been impacted by cancer. Child life specialists also like to use prompted journals using sentence starters or questions to answer that help teens work through their feelings.
Back-to-school time can also be challenging for siblings of a patient, or children of adult patients. When a primary caregiver has cancer, family life can be profoundly impacted. Sometimes children of cancer patients must change schools due to medical travel or because they go to live with other relatives during treatment. Some children miss school or are homeschooled for a period. They, too, have fears and anxieties to work through.
Yifan Wang, MA, CCLS, is a child life specialist at the Fred Hutch South Lake Union campus who works with young relatives of patients. Talking to children after a diagnosis creates a sense of inclusion as well as builds trust and a foundation for ongoing conversations, she said.
“These children also need support, especially when home life is disrupted,” she said. “The classroom environment needs to be supportive, and we consult with patients to provide education and resources. Preparing classmates can prevent an onslaught of questions upon their return. Classmates who have been prepared are also usually more supportive of patients or relatives of patients.”
