A Clear Path

Eleven-month-old Callum Kauzlarich of Omaha, Neb., had a bump on his head. His parents, Kyle and Blair, wanted a clear answer. Was this ridge on their son’s skull something to be concerned about?

The answer wasn’t so black and white. A CT scan revealed that the ridge on Callum’s skull was indeed harmless. But the scan also uncovered something else — Callum had a tumor in the middle of his brain.

“A whirlwind of emotions come over you,” said Blair, who works in 3D medical printing. “I see these things all day, but you never think that it’s going to be your kid.”

Callum had a choroid plexus papilloma in the third ventricle, a rare and benign brain tumor. However, its location caused hydrocephalus leading to elevated pressure in his brain. Because of this, surgery was required. Soon.

This diagnosis threw the Kauzlarich family into a maze of doctors’ appointments. They received diverging opinions from three separate consults with seemingly no clear way forward, they said.

“We were interviewing brain surgeons for a very important job, but how do you choose a path forward when you have no knowledge?” asked Blair, in reference to her search for the best place for Callum’s surgery.

“After every one of these appointments we would sit in the car for an hour just trying to digest everything that had been told to us,” added Kyle. “We were pretty frustrated because we were hearing different things from different doctors and none of the options felt quite right.”

But after Kyle shared his son’s diagnosis with his workout group, a new route emerged that put the Kauzlarichs on their journey to Le Bonheur Children’s and Paul Klimo, MD, MPH, chief of Pediatric Neurosurgery and Co-director of the Neuroscience Institute at Le Bonheur. One of the members knew another Omaha family whose son was successfully treated through Le Bonheur’s joint Pediatric Brain Tumor Program with St. Jude Children’s Research Hospital.

The family put the Kauzlarichs in direct contact with Klimo, and within minutes they were texting him Callum’s brain imaging. One look at the scans and Klimo told them: “I know I can do it.” Performing almost 200 brain surgeries each year, Klimo was familiar with removing abnormalities in the same anatomic space as Callum’s tumor.

“Dr. Klimo offered a different approach, yet again, but he sounded very confident in what he was saying and very matter of fact,” said Kyle. “He told us, ‘We’re going to do it this way, and we should have no problem getting the tumor out completely in one piece.’”

The path forward was finally clear for both Kyle and Blair. They drove their son to Memphis and checked in at FedExFamilyHouse — a free place for Le Bonheur families to stay directly across from the hospital.

They met Klimo and his team on a Monday morning to prepare for surgery the next day.

“Dr. Klimo put us both at ease,” said Blair. “He was finally the one person I could trust with my son’s life. We knew Le Bonheur was the right place.”

Callum had his resection surgery on Feb. 22. Klimo removed the tumor by approaching it between the two halves of the brain and making a small opening in the corpus callosum, the structure that connects the two halves. The tumor was removed in its entirety, and Callum did not require a drain. He came out of surgery with only a bandage on his head covering the three-inch incision.

After just two nights in the Neuro ICU, Callum was discharged to FedExFamilyHouse and a day later cleared to head back home. The Kauzlarichs returned to Omaha post-surgery just two short weeks after they first discovered the tumor in Callum’s brain. Kyle and Blair saw an immediate change in their child.

“There was a new light in our son — his eyes and expressions were totally different,” said Blair. “He had always been a sleepy kid, and we didn’t realize why. He’s so happy now.”

Callum is growing by leaps and bounds. Since his surgery, he started therapy close to home, turned 1 year old and exploded in his motor skills. One potential side effect of his surgery was loss of short-term memory due to the location of the tumor, but Callum continues to perform well with short-term memory tasks.

He will visit St. Jude every three months for the next few years for follow-up and observation. Klimo and the Kauzlarichs anticipate no long-term impact from Callum’s brain tumor.

“Callum has gone through a unique experience and, even though he’s not going to remember any of this, I hope that he looks back and recognizes all the love and compassion that so many people gave him and our family,” said Kyle.

But the Kauzlarichs don’t see their brain tumor journey as completely over. They now work to help other families facing a brain tumor diagnosis find the path that Callum took for healing through Le Bonheur’s Brain Tumor Program and Klimo’s expertise. Working with the SammyStrong Foundation, started by another Le Bonheur brain tumor patient family in Omaha with the mission to support children, families and organizations fighting pediatric brain cancer, the Kauzlarichs have already helped other families find their way to Klimo and Le Bonheur — from Omaha and beyond.

They have also donated part of Callum’s tumor to St. Jude for research — another way that the Kauzlarichs are doing anything possible to help future families facing a similar journey.

“Through the whole experience, we were overwhelmed with an outpouring of compassion. Everyone at Le Bonheur and FedExFamilyHouse were very supportive and cared a lot about helping us work through this,” said Kyle.

“It was the worst case scenario, but the best outcome possible,” adds Blair. “I don’t know how to put into words how grateful we are for Dr. Klimo and his crew.”