When it comes to martial arts, 6-year-old Zoë Harrison has all the right moves. She’s strong. She’s fearless. She’s disciplined.
But Zoë’s not too sure about the prospect of lying on a table with a mesh mask clipped to her face. It’s a little scary—even for a karate kid.
At St. Jude Children’s Research Hospital, Zoë will receive 30 radiation treatments for craniopharyngioma, a rare brain tumor. Precise positioning is crucial to ensure the radiation beam touches only the tumor, not healthy brain tissue. If Zoë is to avoid having anesthesia every day, she must learn to lie perfectly still.
The little girl needs someone who can offer guidance, focus and support. That’s where the St. Jude Child Life Program comes in. Amy Kennedy, a certified child life specialist, will help Zoë prepare for radiation therapy.
Little girl, high stakes
“Familiarity is a huge thing, and it’s important to give kids an opportunity to make this normal,” Kennedy explains. “Get used to it, get comfortable, meet the people, feel settled.”
Under Kennedy’s guidance, Zoë has already successfully completed one diagnostic scan. But the stakes are higher for radiation therapy. If she cannot lie still, then Zoë must be sedated—a process that requires fasting beforehand and causes grogginess afterward. Daily sedation may also pose long-term health risks that include respiratory and learning problems.
“I’ve seen Zoë go through sedation back-to-back, two days in a row,” says her mom, Cheila Rosencrans. “It was hard for me to watch. It takes a few hours for her to sleep the medication off, and then she’s grumpy and not herself. So if we can avoid sedation, I’m all for it.”
At St. Jude, Child Life Director Shawna Grissom leads a team of 18 professionals trained to work with children at different ages and developmental stages.
“We assess patients from the standpoint of age, previous hospitalizations and treatments, coping styles and temperament,” Grissom says. “Then we prepare the children for what’s going to happen. We show them pictures and walk them through the process. And then we actually practice in the treatment room.”
Each patient is different. One child may require only 30 or 45 minutes of preparation. Another may need a couple of weeks, easing into the process slowly.
“Maybe we work today for 10 minutes, lying still with the mask on,” Grissom explains. “When the child gets restless, we get up, high-five each other, and do something fun for a while. Tomorrow, we lie still a little bit longer.”
Grissom, Kennedy and their colleagues recently published a paper detailing how they decreased sedation use in children undergoing radiation therapy for brain tumors. These interventions not only reduced the children’s anxiety, but also their clinical risk. By eliminating the use of anesthesia and reducing treatment time, the process also saved the hospital about $80,000 per patient.
A sense of control
When working with St. Jude patients, child life specialists rely on developmentally appropriate play, education and distraction. This may include music, recorded books, guided imagery and encouragement.
Before 7-year-old Addison Waldsmith began receiving radiation treatments for the brain tumor medulloblastoma, she met with Kennedy for two weeks. Kennedy introduced Addison to the room, the staff and the mask. Addison was delighted to learn she could eat breakfast before treatment if she did not have to undergo anesthesia. She could also complete the process in about 20 minutes, versus the two or three hours required for sedation and recovery.
Although Addison required sedation for the first couple of sessions, she completed the remaining treatments independently.
“Amy empowered Addison, boosting her confidence,” says Addison’s mom, Jenny.
“It’s partly a control issue for these kids,” Jenny continues, “and that’s one thing Addison could personally control. She had her own little destiny there. She’s 10 now, and she’s so proud that she can do it.”
After working with Zoë for a couple of weeks, Kennedy is ready to introduce her to the treatment room. First, they look at photos of the facility.
“You’ll lie on this table, and they’ll make sure you’re in the right spot,” Kennedy explains. “We’re going to go down there and show you how they do that. This machine is what will give you the radiation. You won’t feel it or see it.”
Arriving in the treatment room, Zoë scrambles onto the table.
“When the table moves around, it kind of sounds like an airplane,” Kennedy warns. “We’re going to show you how the machine moves so there won’t be any surprises. All you’ll have to do is hold still like you did the other day. Remember how well you held still? You were quite the rock star last week.”
After asking a few questions, Zoë lies down. But moments after the mask snaps to the table, she shows signs of unease. When, after several adjustments, Zoë expresses continued anxiety, Kennedy reassures her.
“I don’t want you to be scared and worried about this,” Kennedy says, and guides the little girl back to the lobby, where her mom is waiting.
Because of Zoë’s apprehension, Kennedy suggests scheduling a couple more practice sessions.
Moment of truth
In spite of their best efforts, some children still require sedation.
“Maybe they can’t separate from their parents,” Grissom explains. “Maybe they’re just fidgety. Maybe there’s something in the location of their tumor or the way they have to lie on the table that makes them uncomfortable or unable to lie still.”
After a few more meetings with Kennedy, the day arrives for Zoë’s first radiation therapy appointment.
“Zoë has been doing karate since she was 2,” Kennedy observes. “I think a lot of the discipline that goes along with karate will help her be successful. She knocked it out of the park on the day of her simulation.”
In the lobby, Cheila waits, hoping her daughter can complete treatment without sedation.
The minutes tick by. People come and go.
Finally, the doors open to reveal Zoë skipping down the hall, excited and proud of her accomplishment.
“That wasn’t long at all,” Zoë announces to her mom. And she does a little karate move to punctuate her victory.
From Promise, Autumn 2016