Child Life in Action

in Radiation Treatment with Kaylee O'Brien, MS, CCLS

by Bea Wikander | June 30, 2020

Kaylee and a patient

Kaylee O’Brien, MS, CCLS, is a child life specialist at University of Chicago Comer Children’s Hospital. Her first exposure to child life was through her sister, who was born with congenital heart defects and was chronically sick. Kaylee's sister spent significant amounts of time in the hospital, and Kaylee would visit her in the evenings after homework and soccer practice. Her mother often raved about the child life specialists who had brightened their day. “These people come in and turn her day around.” Kaylee was happy to know there were people making her sister’s hospitalization easier, but she didn’t consider it as a possible profession. As a teen, she wasn’t sure what child life entailed and assumed it was more medical than psychosocial.


Sadly, Kaylee’s sister passed away when she was thirteen and Kaylee was fifteen. Kaylee went on to college, where she played soccer and majored in psychology. On a class trip, a professor mentioned child life, and Kaylee recalls that “alarm bells started going off.” She remembered her mother’s enthusiasm for the healthcare workers who had taken such good care of her sister and realized it was a career than combined her interest in children and psychosocial care.

After getting a master’s degree at Erikson, volunteering at the hospital where her sister was treated, and completing three practicums, Kaylee secured an internship at Comer’s Children’s Hospital. She was looking for global experiences and was impressed by the size of Comer’s child life program. Comer's has the only Level 1 Pediatric Trauma Center on the South Side of Chicago and treats more than 35,000 patients each year. The state-of-the-art PICU has thirty beds.

A child life position opened up just as Kaylee was finishing her internship, and she successfully interviewed for the position. She has worked on the oncology/hematology floor for the past three and a half years. In that time, the child life department has grown significantly and currently employs twenty-two full-time staff, including three supervisors, three music therapists, and one art therapist. 

 

“These people come in and turn her day around.”

Kaylee and patients
MIBG slide_2
MIBG slide_2

©2020 UChicago Medicine Comer Children's Hospital

As a specialist in the hematology/oncology unit, Kaylee does new diagnosis education and preparation for procedures such as port placements, PICC lines, and chemotherapy. She also provides support if a patient needs a PICC line insertion without sedation. Many Comer’s patients are long-term stays, including some who are there to receive stem cell transplants. These kids often stay for months, and Kaylee makes their rooms feel more like home, with special sheets, decorations, and toys. She also works to support school reentry by educating the patient’s peers about the symptoms and side effects of chemotherapy.  

Comer’s provides MIBG (metaiodobenzylguanidine) therapy for neuroblastoma and is one of only around ten hospitals in the country to provide this treatment. MIBG is combined with radioactive iodine to deliver targeted radiation therapy. Patients who receive MIBG treatment need be isolated for a period of time after treatment because they are radioactive. Comer’s has lead-lined rooms for this purpose, and patients stay alone in the room for a couple of days to a week. On average, there is one child a month receiving this type of treatment and subsequent isolation.

Kaylee and her team use a child-friendly prep book with lots of photos to explain how the MIBG medicine targets tumors using radiation and why the radiation means isolation is required for several days after the treatment. 

Slide about decorating room
©2020 UChicago Medicine Comer Children's Hospital
Slide about communication
©2020 UChicago Medicine Comer Children's Hospital

The rooms are not naturally inviting or comforting, but Kaylee and her team work hard to personalize them. All items must be thrown out after the patient has completed the treatment because of the radiation, so patients are advised to bring nothing with them. Instead, Kaylee orders their favorite toys, art supplies, and bedding. Kaylee and her team even load their favorite games on the iPad. Kids spend one night in the room before treatment to become familiar with the set up and to decorate the floor, which is covered in white paper. After the treatment, the child is bedridden with a catheter, so all decoration and exploration needs to happen beforehand.

Caregivers are in a nearby room and can communicate with walkie talkies and Facetime loaded on iPads. Baby monitors are also available, so parents and family members can see the room whenever they wish. There’s a small anteroom where certain people, such as the music therapist, can stand with appropriate PPE.

For older kids, although isolation is appropriately difficult, there is also the excitement of brand-new toys and personalized decor and technology. Some kids really enjoy being able to draw on the floor, something that’s not usually allowed. Kaylee says the whole process “doesn’t seem as daunting when they’re prepared in the right way.” Children under the age of three are treated in the PICU and are sedated for most of the treatment. Kaylee and her team support these younger patients in similar ways by ordering bedside toys and supporting caregivers by providing emotional support and baby monitors and other technology to facilitate communication.

The first twenty-four hours after radiation treatment are the most critical, and once the radiation diminishes, caregivers wearing radiation measurement devices and trained in the appropriate use of PPE can safely sit in the room. Kaylee supports the family as much as the patient, because it's difficult for parents to be separated from their child and unable to comfort them in person.

Kaylee’s experience serving patients in isolation helped her adapt to the challenges of the COVID-19 pandemic. She and her staff worked diligently and creatively to support patients on special respiratory precautions (being worked up for COVID) and relied on technology since they were unable to be in the same room. They used Facetime to assess the patients' needs and increased the child life programming broadcast hospital-wide so patients had additional engaging activities and entertainment to look forward to throughout the day.

Kaylee says, “The biggest takeaway that I’ve learned from COVID highlights one of my favorite things about working in child life: the opportunity to be creative. Doing that allowed my team to continue to individualize and support each patient and their experience while being in the hospital no matter what their needs were.” This creativity and resourcefulness, hallmarks of the child life profession, allowed Kaylee and her team to provide many positive outcomes. Reflecting on the significant challenges and suffering caused by the pandemic, Kaylee relies on another child life skill, the ability to find a silver lining. “Though we all feel we have endured a large setback and though we are all looking forward for the world to go back to what is was, I am absolutely a better child life specialist for it. Speaking for my whole team, we all are, and that’s been a rewarding observation and feeling to have amidst a pandemic.”

 

“The biggest takeaway that I’ve learned from COVID highlights one of my favorite things about working in child life: the opportunity to be creative. Doing that allowed my team to continue to individualize and support each patient and their experience while being in the hospital no matter what their needs were.”

See more Child Life in Action.

 

Child Life Profession