Child Life Specialists: There for the Hard Times

When a young cancer patient needed something more than medical care, a Child Life specialist stepped in to make a difference for him.

Advaith with his parents at Johns Hopkins All Children's Hospital

Advaith with his mom and dad at Johns Hopkins All Children's

Published in Johns Hopkins All Children's Hospital - Summer 2020

August, 2018…

Three-year-old Advaith is the “new kid” on 7 South, the floor of Johns Hopkins All Children’s Hospital where children receive treatment for cancer and blood disorders.

This little boy has been experiencing terrible pain in his left leg, and tests reveal some troubling news. Advaith has Ewing Sarcoma, a cancer of the bone and surrounding tissue. He is frightened and confused – and he isn’t shy about showing it. 

“He would not let anyone near him,” says his mom, Susmitha. “He had so much anxiety, so much fear.” 

It’s normal for a 3-year-old to have fear and confusion about being in the hospital. But Advaith has additional challenges. Speech delays make communicating more difficult, and he has some sensory issues that make even the most benign touches overwhelming for him. The clinical team struggles just to put a blood pressure cuff on his arm or to take his temperature.

Advaith needs to understand what is happening, and he needs help getting through all of the medical procedures that will be necessary to save his life. Most of all, he needs to feel safe.

This is the job of a Child Life specialist.

Leah Frohnerath, CCLS, is up for the task. She’s been helping kids on the hospital’s Cancer & Blood Disorders Institute floor for many years, and while she generally comes bearing toys and games — her mission is bigger than that.

“I often tell kids, ‘I’m your coach — to help you do the things you need to do,’” Frohnerath says. ‘I’m your cheerleader, to help you find the motivation within you to get through things, and I’m your teacher… I teach you about what’s going on with your body to help you understand why you’re here in the hospital.’”

On any given day, about a dozen highly-trained Child Life specialists like Frohnerath are fanned out around the hospital along with support staff, working with patients who’ve been prioritized to be at highest risk for psycho-social trauma — and helping them to navigate their hospital experience.

Every intervention is personalized to a child’s needs. A Child Life specialist could be teaching one child how to swallow a pill, or helping another to understand their illness, or accompanying still another child as he or she undergoes a procedure or prepares for surgery.

The team does most of its work through play.

“We like to think of it as playing with a purpose,” says Child Life Director Kristin Maier. “It’s how patients learn to understand their world and master the things that are happening to them.”

Frohnerath begins to help Advaith by first cultivating a relationship. She gives him the tools he needs to have fun and to express himself. He loves the modeling clay, and the puppets she brings. Being in the hospital is beginning to feel a little less scary.

One big hurdle for Advaith is allowing his port to be accessed so that he can get the medicine he needs. It involves so many things that are stressful for him — to be still, to have people touching him, and to get through a needle-stick, or “poke,” as the Child Life team refers to it.

Frohnerath begins to bring a teaching doll with her on her visits … a soft, stuffed doll that has an actual medical port in its chest. They role play, taking turns, often with Advaith playing nurse as he guides the doll through a port access. 

Advaith tells the doll, “Now remember, you cannot kick!” 

Slowly, the port accesses and other procedures became less traumatic for this little boy. He will be in and out of the hospital for lengthy stays many times in the following weeks and months — and his relationship with the Child Life specialist grows stronger.

That relationship will mean everything when things become much harder.

Harder Times

Despite many months of treatment, the aggressive sarcoma continues to pose a threat to Advaith. His parents receive even more difficult news. … Doctors have determined that the best chance of saving Advaith’s life would be to surgically remove his left leg below the knee. 

Advaith has now turned 4. How do you help a 4-year-old understand and accept an amputation?

In her play sessions with Advaith, Frohnerath is simple, gentle and honest. She begins to introduce the idea to him, meeting him at a level he can understand.

“I explained that doctors would need to take away the part of his leg with the “ow-ee” in it — the part that was making him sick, but that he would get a new leg,” Frohnerath says.

“Every day, she would come and talk to him and play with him,” Susmitha says. “I could see she was building confidence in him.”

Advaith begins processing his situation through play. He creates figures with modeling clay or building bricks and then removes a leg or makes one leg a different color to represent a prosthetic.

He’s a fan of the animated Kung Fu Panda movies, and he begins to connect with one particular character — a bull with a fierce personality who has what appears to be an armored or prosthetic leg. Advaith begins to anticipate this change in his life with the level of acceptance that a young child can, and to talk often about getting his new “bull leg.” 

After Surgery

When Advaith wakes up in the recovery area, he wants to see beneath the blankets. His parents resist. They want to give him more time. But their child insists.

“If he had looked and then asked, ‘Where is my leg?’ — it would have been heartbreaking for us,” says Susmitha. “But he did just the opposite. He took it very positively. He said, ‘OK, now my bad tissue is gone away.’ That was the moment in my own mind where I knew he was going to be OK.” 

About six months after Advaith’s surgery, Frohnerath and the team on 7 South were happy to learn that he was progressing well. He had been fitted for his new prosthetic at another facility, and while such a dramatic change is never simple — he was making real progress.

“Without the Child Life specialists,” says Susmitha, “we would not have been able to come so far. I look at Advaith’s bravery, his confidence … so much of that came from Child Life. I know this will impact him in a positive way as he gets older.”

One day, Frohnerath and a few other staff members who have cared for Advaith receive news that they have a visitor just outside of 7 South. They slip through the double doors of the unit, and there is Advaith – greeting the team with a wide, victorious grin on his face. He is giving them a show — demonstrating his agility with his new prosthetic — literally dancing on his “bull leg.”