Sense of humor helped Carson through treatment for medulloblastoma

Shortly before turning 13, Carson started vomiting and getting dizzy. Eventually, he became confused. He experienced tingling on one side of his body and other symptoms that felt like heat stroke.

After he was mistakenly diagnosed with acid reflux, vertigo and migraine headaches, a psychiatric nutritionist wondered whether it was “all in his head.” The irony of those words would ring too true soon enough.

Not long after the start of 8th grade, Carson, then 14, became even more confused. He couldn’t recall his own name. His balance was out of whack, and he had to grab on to furniture or railings to avoid falling.  

After first being seen at a UW Health facility closer to the family’s home in Lodi, Wis., Carson was rushed to the Emergency Department at American Family Children’s Hospital in Madison.

Initially, doctors were stumped. Carson’s mother, Norma Jean Schmudlach, would not leave the Emergency Room until something more was done.

Mom knew something was wrong

“I know there is something wrong,” she said.

Ultimately, a CT scan was performed, and Norma Jean’s parental instinct proved correct. Pediatric Emergency Medicine specialist Michael Kim, MD, poked his head in the room.

“Can I speak with you both outside?” Dr. Kim said to Carson’s parents.

Norma Jean gulped as she and her husband Bill were informed that their son had a large brain tumor called a medulloblastoma. Located in the cerebellum – the part of the brain that controls balance, coordination and other complex motor functions – the tumor had begun spreading into Carson’s spine as well as into the pathways where brain fluid flows. Carson would need to have surgery the next day – the first of three surgical procedures over the next nine days.

“The tumor blocked the normal flow of brain fluid, causing significant fluid buildup that increased pressure on Carson’s brain, making him very sick,” said Andy Stadler, MD, a UW Health pediatric neurosurgeon. “Our first job was to relieve that pressure by taking him to surgery and creating a new fluid pathway. This let us keep Carson safe as we prepared him for a second surgery, when we would remove most of the tumor.”

Diane Puccetti, MD, a UW Health pediatric hematologist/oncologist who has since retired, said at this point, the medical and neurosurgical teams had a better sense of how to proceed, which they discussed in depth with Carson’s family.

“Carson had a rough road ahead of him, but he has been incredibly strong throughout his journey,” she said.

Surgery, followed by a four-month hospitalization

Two days later, Dr. Stadler removed most of Carson's tumor, leaving behind only a small portion that would not have been safe to resect. Unfortunately, many patients – including Carson – develop a condition called Posterior Fossa Syndrome after this kind of surgery. Symptoms resemble those of a stroke, and in Carson’s case, it meant he had to re-learn how to breathe, walk, talk, eat and control his muscles.

For a time, Carson needed a tracheostomy tube to help him breathe and a feeding tube because he could not swallow food. He also had a third brain surgery in which Dr. Stadler placed a shunt in his head to drain any excess brain fluid that might build up. Moreover, Carson’s autism, initially diagnosed at age 3, added even more names to the list of pediatric specialists who were caring for him.

“Carson’s been seen by just about every specialty except gynecology,” said Norma Jean, who maintains a sense of humor despite the weight of the situation. For four months following his tumor surgery, Carson never left the hospital. Norma Jean saw the outdoors just once – for a few hours – for a quick trip home to grab some new clothes.

On Jan. 10, 2019 – his 121st day in the hospital – Carson was finally discharged. He endured 31 radiation treatments and still returned for several two-night hospitalizations to receive maintenance chemotherapy, which ended in May 2019.

Carson’s sense of humor was among many things that helped him get through this incredibly long hospitalization.

“On his last day of radiation, his parents and I pranked the radiation staff by hiding a whoopie cushion under his bed. Just before they moved him to the radiation table, Carson popped the whoopie cushion, giving everyone a great laugh while celebrating his last radiation treatment," child life specialist Katie Markowski said.

Good news is better when the doctor sings

Every MRI scan brings anxious moments, but when the results are good, Carson and his family loved nothing better than hearing it from Dr. Puccetti, who couldn't help bursting into song when she had good results to share.

The situation goes like this:

Norma Jean’s phone rings. She answers with the usual, “Hello.”

“I’m singing! I’m dancing! And, yes, I’m smiling!” Dr. Puccetti said on the other end of the call with a lilt in her voice.

“The moment I hear those words,” Norma Jean said, “I start crying tears of joy because I know Carson’s cancer didn’t grow.”

For Carson and his family, every day that his cancer remains stable is both a blessing and a gift.

“It’s hard dealing with the unknown, but we just go with it,” Norma Jean said. “We take what we have and just keep making memories.”