Journey to Hentz-Ville

HENTZ-VILLE MAY SEEM like a very lonely place. The population is, after all, one.

Hentz-Ville, according to ESPN, which bestowed the title on Stanford volleyball player Morgan Hentz last year, is the area that Hentz commands on the volleyball court — the area where no ball shall fall with Hentz stationed nearby. It’s the space that teammates surrender to her defense. That space, that area, is Hentz-Ville. 

But Hentz-Ville can be more accurately mapped in a quiet neighborhood in the Cincinnati suburb of Lakeside Park, Kentucky. Hentz-Ville, Population 6. 

The non-ESPN version of Hentz-Ville is a collective, not an individual. It is a family that works as a team, each with their own task, each with responsibilities that cannot be performed without the help of another. This is how the Hentz family conducts its day. With autism, there can be no other way, particularly in the care of Morgan’s 16-year-old brother Louie.

“It’s phenomenal to see the family in action,” said Morgan’s beach volleyball teammate Amelia Smith. “They all have their jobs, they all know what to do. They work together in times of crisis and in times of peace.

“It’s beautiful to watch. They’re compassionate and kind and considerate of everyone around them, including their son.”

When Louie, the third of Mike and Kerin’s four children, was a year old, his head was measured as part of a regular doctor’s visit.

The nurse looked at the tape with a puzzled look and measured it again. And again and again. It didn’t take long for a sickening feeling to creep over Kerin. This can’t be right, she thought.

Louie had exhibited some unusual tendencies. He cocked his head to one side. He seemed tired even when well-rested.

On Good Friday, a day that Kerin never will forget, Louie received a brain scan. The results showed medulloblastoma, a cancerous tumor the size of a baseball -- a fourth of Louie’s head by volume was a tumor.

As the enormity of the diagnosis hit them, Mike and Kerin sobbed together as they crouched on the ground behind their bed, hiding so as not to alarm their daughters.

LOUIE UNDERWENT AN operation at Cincinnati Children’s Hospital, but only 90 percent of the tumor was removed. A month later, he underwent another surgery, this time at St. Jude Hospital in Nashville, removing the rest.

For a year, Louie remained at St. Jude. Kerin moved into Target House, a home for parents of St. Jude patients, while Mike mostly stayed back to look after Morgan and Abby in Lakeside Park. If Louie’s blood counts were healthy enough, at times he made it home for short visits.

“My family understood that St. Jude was really his only chance at survival,” Morgan said. “St. Jude really is a special place and they took good care of Louie and our family, and made it as pleasant as possible. We also received an outpouring of support from extended family, co-workers, friends and neighbors.”

Though the surgeries were successful in eradicating the tumor, something still didn’t seem quite right about Louie. At age 3, he was diagnosed with autism.

Louie does not interact through spoken language – other than simple wants and needs. He’s 16 and weighs 300 pounds because of his meds, and can be difficult to control physically. His life has been one of appointments and therapists. His development has been slow -- hopeful on a good day. He is repeating some lines from familiar movies and videos, creating some optimism about brain development. But there’s no way to know.

Louie likes his parents to take him swimming at the neighborhood indoor pool, and to his favorite fast-food restaurants. He likes to be in the car.

Long ago, Kerin and Mike learned to sacrifice things that other couples take for granted – nights and weekends away, dinners out, and even time with their other children. Instead, they’ve learned to roll with whatever happens and be prepared for whatever comes next.

“I don’t know what it is,” Kerin said. “I guess we’re just in a rhythm that we’ve been in since he was one.”

This family always does what’s needed. Kerin’s father was blind and diabetic. Al Witschy was a large individual with eyes milky with cataracts. From young ages, Morgan and her sisters learned to give him shots. In some ways, caring for him prepped the family for situations they would encounter with Louie.

Since Louie is sensitive to crowds and loud noises, he never has attended one of Morgan’s volleyball matches. But Morgan always found ways to connect. They jumped on a trampoline together in the backyard. Morgan jumped and Louie bounced on his knees. She sits with him as he watches movies and videos -- often through monotonous repetition. And she’ll accompany him to appointments.

“I feel that my role with Louie is to be his friend and simply spend time with him,” Morgan said.

“A lot of people are scared of him because he is so big,” Kerin said. “His behavior can be intimidating. But Morgan always is confident with him.”

That confidence is evident on the court. The willingness to go after the ball that few others would attempt comes from a unique athletics background. Hentz was a gymnast, diver, swimmer, and soccer player. Always competitive and very athletic.

“She’s driven,” Kerin said. “She likes to win.”

Hentz, a senior libero, leads and inspires. She sets standards for energy and intensity, standards especially important this season as the Cardinal has been playing without injured hitter Kathryn Plummer, a two-time national player of the year. Success now requires a certain scrappiness.

“Someone told me once, ‘If you don’t go, you don’t know,’” Hentz said. “That phrase really clicked with me. OK, I’m going to go for every ball.

“I developed a mindset over the years where I might not get to this ball the first 10, 20, or even 100 tries. But maybe on that 500th try, I can get there. And maybe it becomes a habit. And if I’m going for every ball, I have a good chance of influencing my teammates to think that maybe I should be going for this ball too.”

Said teammate and roommate Jenna Gray, an All-American setter, “We all consider ourselves competitive people, but then we think about Morgan … and … well …

“Even in practice, you see her tossing her body on the ground for every single ball. Even on the tough days, she still goes 100 percent. You see her putting in so much effort, putting her body on the line, that you want to do the same. You don’t want to let Morgan down.”

THE PERSPECTIVE OF raising an autistic child for Mike and Kerin is gained by unpredictability. In March, Louie began hurting himself, damaging his eye sockets and banging his head until bloody.

For five weeks, Louie was hospitalized in a padded room, with three large-sized men on constant watch. For a while he wore a helmet. He also wore arm-guard restraints, busting through several pairs.

Across the country, Morgan felt helpless.

“It was very difficult being away from my family during this time,” she said. “I wanted to provide support in some way, but I felt useless being away at school. But I also have a lot of faith in my parents.”

Louie was sedated for much of the time and finally matched with behavior-changing medications that calmed him down, allowing him to go home. Just recently has Kerin felt comfortable enough to bring Louie in public again, for the first time in two years. 

“Unpredictability is the norm with Louie,” Morgan said, “but that doesn’t mean things get easier with each new obstacle he faces.”

Morgan has seen what many of those obstacles are for families and the children themselves. She has soaked this all in, and hopes to tap into her own experiences and feelings to help others like Louie. That’s why Morgan is majoring in psychology, with a goal of working with neurodiverse children.

The cavalcade of in-home therapy sessions – applied behavior analysis, cognitive behavior, speech, and gross motor – parade through Hentz-Ville daily. Watching her mother deal with the bureaucracy of the educational system has helped clarify the post-volleyball path Morgan would like to take.

“Louie’s autism and experience has influenced me to just learn about human behavior in general,” Morgan said. “I’m not really sure where that’s going to take me, but I know I would love to work with kids who have special needs, in therapy or in a classroom.”

Morgan returned home last summer and celebrated her 21st birthday with a family tradition – a mudslide party. Behind their house is a large hill. Plastic tarps were nailed with bolts into the slope and a hose placed at the top. The bottom, essentially, was a mud pit.

Several Stanford teammates came to celebrate – Gray and Smith among them – and joyfully slid down the hill before flopping into the mire below.

“You get completely muddy,” Smith said. “Once you’re muddy the first time, then you just keep on getting muddy. You don’t care anymore. I’ve never seen so many people have such outrageous fun.”

But when the hose is turned off, the guests have left, and the tarps are removed, it’s Hentz-Ville once again -- just Mike and Kerin, Morgan, Abby, Louie, and Joelle.

Morgan might take little sister and friends to the movies. She’ll play some games. She’ll help her parents. And she’ll be by her brother’s side.

“I’ve always been super grateful to Louie for opening this idea of service and giving back to the world,” Morgan said. “I feel like I would never wish what Louie had on anyone, but I think that because of my family and being able to make the most of the situation, I’ve learned a lot from him and my parents. They are the biggest role models in my life — the sacrifices they have made for our family. They have always put us kids first.”

There are two scenes from the summer that Kerin treasures and was fortunate enough to capture with photos. In one, Louie and Morgan are sitting on the couch. Morgan leaned over and kissed Louie on the forehead.

In the other, the two walked together toward a therapy session. Louie reached over and grabbed Morgan’s hand.

“He just loves her,” Kerin said.

She scrolled through her phone and stared at the photos again, this time pausing a little longer.

“These touch my heart,” Kerin said. 

Ahead are unforeseen challenges, made more meaningful by moments such as these. But the rhythm of Hentz-Ville does not slow. The phone is put away and the next moment unfolds.