Nine-year-old Lilly is a cheerful girl who loves to laugh and get others laughing with her. She’s being treated for medulloblastoma, a type of brain cancer, at St. Jude Children’s Research Hospital.
Radiation therapy is an important part of Lilly’s treatment at St. Jude, and is just one of a number of medical procedures that can be scary and isolating, especially for a child. When Lilly came to St. Jude, she couldn’t walk, talk or swallow. "It was hard to communicate enough with Lilly because she couldn't talk initially. And she would get nervous before radiation,” her mom, Katie, explained.
But the Child Life specialists at St. Jude were there to make the experience more comfortable for Lilly and her entire family. In fact, a new study from St. Jude shows that play-based training and assistance by certified Child Life specialists for children receiving cranial radiation therapy lowered sedation use and treatment costs.
Lilly practices vowels with her speech-language pathologist, Kristin Lyons, from Rehabilitation Services.
In the St. Jude study, which appeared in the journal Supportive Care in Cancer, Child Life specialists prepared patients for cranial radiation therapy by using materials including picture books, videos or a teaching doll. They followed up with a practice session in which patients rehearsed a radiation therapy session.
Child Life specialists also helped patients develop individual coping plans to remain still during treatment, such as listening to music or an audio book.
Although Lilly received sedation for radiation therapy, Child Life individualized their interventions to ease her anxiety. “Lilly watched Elf every day before she 'went to sleep'," Katie said. “Child Life got the movie for her, and every day they made sure it was in her room, set up and ready to go. It calmed her nerves and even got to be where she was quoting lines from the movie as she was getting her speech back,” Katie said.
“That gesture, to us, was just amazing, and you don't get that everywhere,” Katie said. “It's not a natural thing to watch your child do every day, to go through radiation, so it calmed our nerves, too, to have Child Life looking out for us and setting up the movie every day.”
Now, Lilly is speaking and eating again on her own, and is close to being able to walk again. “Lilly has taught me what it’s really like to persevere,” said Katie. “And to trust. She has taught me what it’s like to fight even when you don’t feel like you can go on any further.”
She’s my hero. You know, a lot of people don’t get to meet theirs. Mine calls me Dad.