Jace’s story: Expert neurosurgery care with help from two golden retrievers

Eleven-year-old Jace was understandably nervous when he came to Children's Health℠ for a second opinion.

“Another doctor told me there was a hole in my skull and they needed to put a metal plate in my head, and that was pretty scary,” he says.

Jace’s mom, Suzanne, requested a child life specialist, hoping their team could help make this appointment a little easier for Jace. Child Life Specialist Lauryn Shackelford greeted them for their appointment with a facility dog named Maze.

“I was a lot less worried because I met a dog that looked a lot like my dog,” Jace says.

Jace and Lauryn talked about how dogs like Maze work at the hospital, helping kids feel better. Jace told her about his yellow lab Luna and how he makes YouTube videos about her.

Meanwhile Jace’s parents met with Dale Swift, M.D., Pediatric Neurosurgeon at Children’s Health and Professor at UT Southwestern to discuss the abnormal area of tissue that was creating a hole in Jace’s skull.

A suspicious bump

A few weeks earlier, Jace noticed a bump on his head.

“I didn’t remember hitting my head, but I had this bump that hurt when I pressed on it. I figured I should tell my mom,” Jace says.

Suzanne started jumping to worst-case scenarios while her husband, Adam, reassured her Jace probably just bumped his head playing soccer.

But the bump didn’t go away, and X-rays revealed something very abnormal on the back of Jace’s skull. Their pediatrician recommended more imaging and referred them to neurosurgery.

Before coming to Children’s Health, they met with a neurosurgeon who said a biopsy was needed, which would require a surgical procedure and navigating around some critical veins. Then they’d do a second surgery to remove the lesion and a third to put in a plate.

“Jace just started crying and I was trying so hard to stay strong for him,” Suzanne says. “I ended up spending most of the appointment in the hallway trying to soothe Jace, while my husband finished the conversation.”

Jace’s parents decided to seek a second opinion at Children’s Health. They had a better experience coming out of their appointment with Dr. Swift.

“The air felt lighter when he walked in the room,” Suzanne says. “He’s very knowledgeable and answered all our questions, but he’s also goofy and made Jace smile. He told us: ‘I'm 98% sure this is a very rare condition called Langerhans cell histiocytosis (LCH).’"

A different care plan based on new research

LCH is a rare condition that happens when immune cells called Langerhans cells build up in the body, sometimes creating tumors or empty spaces called lytic lesions.

Dr. Swift explained the diagnosis and called in Angela Price, M.D., Pediatric Neurosurgeon at Children's Health and Associate Professor at UT Southwestern. She had recently done a study of kids with LCH on their skulls, which followed some kids who had surgery and some who had no treatment other than monitoring their lesion over time.

The results revealed a crucial finding: The lesions shrank or completely disappeared in all of the kids who did not have surgery.

Dr. Price examined Jace and told his family: If Jace were my child, I would wait to have surgery.

Dr. Swift also took Jace’s case to a conference with Dr. Price and a larger team of radiologists, oncologists and neurosurgeons. Then he called Suzanne.

“I’m a neurosurgeon, and I’m telling you, it's OK to wait to have surgery,” Dr. Swift told her.

The power of child life and facility dogs

They waited three months to come back for more imaging. Lauryn and facility dog Rex walked them to Jace’s CT scan which revealed good news: the lesion was shrinking and his skull was healing.

Six months later, Jace’s lesion was completely healed.

At their last appointment with Dr. Swift, they didn’t ask for Lauryn or the facility dogs, but Lauryn and Rex found them in the waiting room. The Children’s Health marketing team was filming a social media video about Rex that day and asked if Jace would like to help.

“It was incredible to see Jace go from this quiet, anxious kid to lighting up and helping us with the video,” Lauren says.

Luckily, Jace didn’t need major surgery. But Rex, Maze, Lauryn and her team are there for the kids and families who do.

“In the hospital, there are situations where there simply aren’t words to make things better,” Lauryn says. “But the dogs can be there in those moments and change the whole atmosphere.”

Now 12, Jace is busy fishing, participating in Boy Scouts and playing defense for his soccer team. Suzanne also sees a newfound confidence in Jace, knowing he can heal – and handle scary things.

“If we ever need to go back to the hospital, we’ll always choose Children’s Health,” Suzanne says. “We knew they were doing what’s best for Jace. And having those dogs to ease our minds also made a huge difference.”

Learn more

Children’s Health offers expert care for a wide range of pediatric neurological conditions. We tailor care to each child’s unique needs, from their physical health to services like child life that make being at the hospital easier on kids and families. Learn about pediatric neurology and neurosurgery at Children’s Health.