“He lived like the boy in the bubble, but we had fun”

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Russell Cowherd had three wishes. He wanted to go swimming, to visit his father and sister in Wisconsin and learn to drive a car.

For a typical 16-year-old, these wishes wouldn’t be out of reach. For Russell, though, severe medical challenges presented obstacles.

That was until the team at Riley Children’s Health got involved, advocating for the teen and his family outside of the dialysis clinic where he had undergone treatment for years.

It’s how Russell, his mom, nurse and two cousins ended up splashing in the private therapy pool at the JCC in Indianapolis one day last month. And how, days later, Russell was on his way to Wisconsin to see his dad.

He didn’t get to see his third dream come true, though, before passing away in late July due to complications from underlying medical conditions.

With permission from his mother, Angela Miller, the story of Russell’s trip to the pool and the joy he and those around him experienced is being shared here in his memory.

It all happened because of the compassion and persistence of many people, including Riley outpatient dialysis clinic nurse navigator Suzie Hedrick and Riley pediatric psychologist Julia LaMotte. Both were with Russell when he, his cousins and his mom gathered their pool toys and hopped into the warm water at the JCC, while a lifeguard stood watch.

Hedrick, in fact, was in the pool with Russell, making sure he felt safe in case of a medical emergency.

There were no emergencies that day. Just smiles, giggles, splashes and squirt gun fights as Russell got to experience the joy of being a kid again.

Russell, who was born three months early and was a Riley patient most of his life, was followed by several hospital teams, including GI, neurology and palliative care, as well as nephrology. Diagnosed with end stage renal disease, he was a dialysis patient at Riley for years, the past two on hemodialysis, requiring multiple trips from his home in Fort Wayne to Riley in Indianapolis each week for treatment.

“Working in this field, we are often confronted with the realities of unfairness in the medical diseases and the way they deprive children of childhood,” LaMotte said.

As his condition deteriorated over the past several months, she and others on his care team decided to do what they could to make some of his wishes come true.

Months in the making, the pool visit required an extraordinary amount of coordination and care, with Hedrick on hand to keep Russell’s dialysis access port covered and secure and to change the dressing once he was out of the pool.

“I’ve known Russell for eight years, and I knew one of the things he really wanted to do was go swimming,” Hedrick said. “I thought, ‘how can we make this work for this kid?’ We wanted to do whatever we could to make his day.”

Angela Miller made the two-hour trip from Fort Wayne with her son and his cousins that July day, anxious but eager at the same time.

“He loves to play in the water,” she said when they arrived. “It’s been difficult since he went on hemodialysis.”

Miller, who described her only child as reserved, “unless he’s talking smack about a game,” shared Russell’s love of sports and video games.

“Before all this, he used to like to play soccer,” she said. “He was so much more active.”

He longed to go to school like other kids, but aside from early attempts when he was in kindergarten and first grade, it wasn’t to be.

“He lived like the boy in the bubble, but we had fun,” his mom said, recalling video game challenges with his cousins and pretend swordfights and Nerf wars at home.

“The hardest part for me is not being able to fix it. If I could trade places, I’d do it in a heartbeat.”

On this day, though, Russell was living his best life in the pool, using a water gun to instigate yet another competition.

Later, as Hedrick and the boy’s mom coaxed him to float on his back from one end of the pool to the other, the longtime nurse was struck by something as simple as his smile.

“I haven’t seen that smile in I don’t know how long,” she said. “It brings tears to my eyes.”

It comforts her now because that is how she will always remember him.

“This was an amazing experience we were able to give to Russell and Angela,” Hedrick said, adding, “We have a great team that figured out how to make this happen.”

For LaMotte, seeing Russell enjoying an hour or two of “normalcy” in the pool brought her emotions to the surface.

“This may seem small, but this is really big,” she said quietly from the pool deck. “In some ways, I’m speechless. It’s a recentering of our ‘why’ at Riley. It’s just very cool.”

Kristin Miller and Garrett Smith, outpatient dialysis clinic nurses at Riley, saw Russell frequently during his treatments, and both were struck by the bond he shared with his mom, who stayed by his side for hours as the machines did their work to cleanse his blood.

Often, Miller would play worship music to calm him and herself, while he colored, played with his action figures or sometimes just slept.

“He really loved his mom,” Smith said. “They were everything to each other.”

“She was always there for him,” Miller agreed. “She always advocated for him to make sure he was getting the best care, explaining his complex medical conditions.”

When a stuffed bunny that Russell brought to treatment came unstitched, Miller was able to sew it back together. In presenting the “surgically repaired” animal back to her patient, she was rewarded with his smile.

“It was so nice seeing him be happy about that,” she said.

“He was a great young man,” Smith said, “who had a big impact on all of us.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org