Josh Cares: Nonprofit's mission to ensure kids aren't lonely, scared during long hospital stays

Program serves patients at Cincinnati Children's

CINCINNATI – Troy Pearce was on a family vacation at Lake Cumberland when his 6-year-old son broke his leg so badly that the little guy needed surgery.

“That’s when it all started,” said Pearce, who lives in Union.

What started that day in 2010 was a series of medical emergencies that turned his family life upside down. Pearce’s wife, Sarah, was pregnant with triplets and went on bed rest at Good Samaritan Hospital two weeks later. Little Hagen’s leg was hurt so badly that he missed the last two months of kindergarten. And the couple had a 2-year-old boy, Catcher, at home, too.

That was a lot to juggle for Pearce, who also has a downtown dental practice to maintain. But it got even more hectic.

The triplets were born nine weeks early, and Presley, the smallest, was so sick that he was rushed to Cincinnati Children’s Hospital Medical Center two days after he was born.

At that point, Pearce had his wife and two babies in one hospital, a third baby at another hospital, one son at home with a broken leg and another toddler in the mix.

“We had really kind of a tough go there for a little bit,” Pearce said.

That’s where Josh Cares came in.

The Cincinnati-based nonprofit has a team of trained “child life specialists,” professional caregivers who spend time with critically and chronically ill children at the hospital when their families can’t be there. To view a promotional video about the nonprofit, click here or go to https://www.youtube.com/watch?v=BD7glUcQ0iQ&list=PLw8HsU2faCQ3IdQiGHJiR0x-EKGA35MvQ .

Some families, like the Pearces, have competing obligations that make it impossible for a parent to be at the hospital for hours at a time.

See photo

Other children at the hospital are in foster care without a biological parent who can stay with them. Still other young patients’ parents or guardians lack transportation or live too far away to visit frequently, said Joy Blang, executive director of Josh Cares.

“We have some difficult situations that many of our families face,” Blang said.

The goal of Josh Cares is to support the children and their families during such a stressful time. On any given day, there are about 25 young patients at Cincinnati Children's whose families can’t spend much – or any – time with them, Blang said.

“We want to make it clear to the families that we’re not judging them for not being here. We really aren’t,” said Amy McGrory, Josh Cares’ senior child life specialist. “We’re just realizing that they’re under a lot of stress and can’t be here, and we just want to help them through it.”

Founded Out Of Tragedy

Josh Cares was founded in memory of Josh Helfrich. Josh was just 10 years old in 2004 when he was critically injured as the result of a bicycling accident. He spent the final days of his life being treated at Cincinnati Children’s before he died.

Although his parents, Ann and Mark Helfrich, stayed by their son’s side, they noticed there were many other children in the Pediatric Intensive Care Unit who didn’t have a single visitor during the days Josh spent in the hospital.

When the Helfrichs and their friends, Dan and Lynn Pierce, were trying to think of ways to honor Josh after his death, they thought about those lonely, young patients and established the Josh Cares Child Life Program.

Since its formation in 2005, Josh Cares has grown from funding two annual fellowship positions at Cincinnati Children’s Pediatric Intensive Care Unit to an annual budget of $400,000 and a staff of six full-time child life specialists. Two of them concentrate on patients in the Newborn Intensive Care Unit while the rest work with older patients who need them.See photo

 

“Families are under such incredible pressures,” said Jack Horn, assistant vice president for patient services at Cincinnati Children’s. “They need to keep their jobs. They need to keep working so they can maintain their insurance.”

But, for a child, being hospitalized for weeks, months or sometimes even years can be lonely and frightening. And being lonely and scared can interfere with their treatments and recovery, he said.

The Josh Cares team – which works closely with the other 22 child life specialists who work throughout the hospital – build relationships with their young patients so they understand what’s important to them, said Sharon McLeod, senior clinical director in the division of child life and integrative care.

A 4-year-old boy who had been a long-term patient at Cincinnati Children’s, for example, had developed a special friendship with the man who cleaned the hospital floors with a big floor buffer.

When it was time for the boy to transfer to a long-term care facility, a Josh Cares child life specialist visited the facility first to take pictures of it for the boy and find out what kind of floor-cleaning equipment the facility used and who did the work.

When the boy went to see the facility for the first time, the Josh Cares staffer made sure he got to meet the man who buffed the floors there, too, McLeod said.

“They really take into consideration

what’s important to the children,” McLeod said.

A Grandmother’s Struggle

Peggy Rosenbluth knows about that first-hand.

She encountered Josh Cares when her 15-year-old granddaughter, Katlyn, was hospitalized in early 2011.

Katlyn was diagnosed with a heart problem when she was just a toddler. During her freshman year at Anderson High School, she developed a blood clot in her leg that required her to go to Cincinnati Children’s.

Katlyn’s mother was away in rehab, and her mother’s boyfriend was taking care of her and three other, younger children.

During her stay in the hospital, Katlyn had a stroke that left her entire left side paralyzed.

Rosenbluth visited Katlyn in the hospital as much as she could. But she lived an hour away in Amelia, ran her own business and also was taking care of her elderly mother.

“I tried to be at the hospital four or five hours a day,” she said. “But the times I couldn’t be there, the Josh Cares staff was instrumental. They sang. They did massages, did her nails. They just sat and talked with her.”

Rosenbluth was making arrangements for Katlyn to live with her when the teen died April 11, 2011.

“In retrospect, I think, ‘You should have given up everything and just stayed there,’” Rosenbluth said. “But I was expecting to take her home.”

‘It’s OK To Cry’

The unspeakable grief of losing a child is part of the job for Josh Cares.

When that happens, the Josh Cares team is there to comfort the families left behind, McGrory said.

“I think it’s OK to cry because you have feelings, and you’re human,” she said. “But you need to remind yourself that you’re not the parent, and you don’t want the parent to be comforting you.”See photo

 

McGrory and her five child life specialist colleagues take photos of their patients’ milestones at the hospital – whether that’s eating a first bite of rice cereal or taking a first step or having an important visit with a sibling.

Each patient gets a keepsake book to take home that is filled with photos. McGrory said Josh Cares staff also makes photo collages and books for parents to help children at home who might be frightened or confused by the medical care their brother or sister is receiving.

When a patient dies, those pictures, collages and books can give parents comfort that their children were cared for and happy – even when their families couldn’t be with them.

When a patient gets better and leaves the hospital, those keepsakes serve as reminders of the important role Josh Cares played in the recovery.

That’s how it is at the Pearce house.

Little Presley went home to his family after more than two months at Cincinnati Children’s and got a Josh Cares book to take with him.

Now almost 4, Presley has had 21 surgical procedures since he was born. He’s got scars. He was just diagnosed with cerebral palsy. His three brothers and his sister all know Presley is special, Pearce said.

And just about every night, one of the kids pulls the Josh Cares book off the bookshelf.

“We call it Presley’s little book, and it’s about him,” said Pearce, whose dental practice now helps sponsor Josh Cares’ Food Truckin’ For Josh fundraising event. “We read it all the time.”

Hearing that brought a big smile to McGrory’s face.

Because the Josh Cares child life specialists know that while some of their patients don’t get the happy endings that Presley did, all of their stories are worth remembering.

The next major fundraiser for Josh Cares is called Food Truckin’ for Josh Cares: Presented by General Mills and Kroger. Rockfish is the communications sponsor. Ten food trucks will be at Fountain Square downtown from 11 a.m. to 2 p.m. on Wednesday June 18. For more information, go to http://www.joshcares.org/events-web-app/food-truckin-for-josh-cares-a-downtown-food-truck-festival#.U1lo3-jsUeM .See photo

 

For more stories by Lucy May, go to www.wcpo.com/may . Follow her on Twitter @LucyMayCincy.

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