‘It was a breath of fresh air’ – treatment of rare tumor helps KCH patient feel like herself again

BYLINE: By Hilary Brown

Newswise — LEXINGTON, KY. (Jan. 16, 2024) – With one smile, 18-year-old Payton Ebertshauer of London can light up any room.

Her mom, Stephanie, describes Payton as kind, compassionate and loyal to her close-knit group of friends. She loves to go out to eat and to the movies with them, or just hang at home watching Netflix. All in all, Payton is your typical teenager living a typical teenage life.

But for three years, she could feel that something wasn’t quite right.

It started with stomach pains – strong, debilitating pain that would last 24 hours then subside. Months later, the pain would return, worse than before. Visits to the local emergency department, blood work and X-rays provided little relief in the form of a conclusive diagnosis. Payton was given some less-than-helpful advice and sent on her way.

“It was basically dismissed as being her diet,” said Stephanie. “We never were able to narrow down what she would eat that would cause the problem, so we were told to try and stay away from processed foods. Let’s face it – she’s a teenager, that was nearly impossible.”

The episodes became more and more frequent. In addition to stomach issues, Payton experienced headaches and felt sluggish. One more trip to the emergency department finally revealed the cause of Payton’s symptoms, and it wasn’t pizza and ice cream.

It was a tumor, the size of a softball, on the head of Payton’s pancreas. She was immediately sent to the Makenna David Pediatric Emergency Center at Kentucky Children’s Hospital for further imaging and testing. According to Stephanie, Payton isn’t one to show emotion, but once they understood how serious her condition was, Payton broke down in a way that shattered Stephanie’s heart.

“As a mom, I felt like I had let her down,” she said. “I felt like I didn’t pursue things hard enough and advocate more for her when she wasn’t feeling well. In retrospect, I don’t know that it would have changed the outcome but knowing she suffered for three years made me feel like I had failed her.”

Solid pseudopapillary tumors are rare, occurring typically in young women. Not only did the size of the tumor cause Payton pain, but it made eating and gaining weight difficult. At the time of her diagnosis, 16-year-old Payton only weighed 112 pounds. While the cause of these tumors are unknown, and the only treatment is surgery. If left untreated, the tumor could metastasize and spread to other organs.

On June 29, 2022, three weeks after her diagnosis and three years after the first painful episode, Payton underwent surgery to remove the tumor. Since this type of tumor is rare and not typically found in patients so young, pediatric surgeon Eric J. Rellinger, M.D. teamed up with Markey Cancer Center surgical oncologist Prakash K. Pandalai, M.D. for the complex procedure.

“Dr. Rellinger and his team are an absolute godsend,” said Stephanie. “Trying to wrap our heads around everything was near impossible, and it sounded like Greek to us, but he and Dr. Pandalai took time to listen to our concerns and explained things in a way that made sense. We really felt like part of their family and that Payton mattered to them. In a time of uncertainty, that was a breath of fresh air.”

Payton underwent a pancreaticoduodenectomy, more commonly known as a Whipple procedure. In this complex surgical procedure, nearly half of the pancreas and the first portion of the small intestine, called the duodenum, are removed. This is the area where the liver and pancreas drain into the intestine to allow for digestion. Once the tumor is removed, Rellinger and Pandalai made a new connection between the intestine and the bile duct, pancreas and stomach.

“We are fortunate at Kentucky Children’s Hospital to work and collaborate with our Markey surgeons at Chandler Hospital,” said Rellinger. “This partnership allows us to collaborate to help children and adolescents when rare types of cancers develop that benefit from the skill sets of both our Markey surgical oncologists and our pediatric surgical team.”

Such matchups between pediatric surgeons and adult surgical oncologists are rare at UK HealthCare, with only a handful of joint procedures performed every year. Rellinger credits KCH’s close proximity to surgical specialists such as Pandalai as the reason for such successful outcomes on rare and complex cases.

“Dr. Pandalai is a tremendous asset to our surgical community here at the University of Kentucky,” he said. “He is a tremendous technical surgeon, but also has an inspirational collaborative spirit that makes multi-disciplinary teams like this easy to accomplish.”

After the eight-hour procedure, Payton spent eight days recovering in the hospital. She faced and long and brutal recovery, but two little words from Rellinger and Pandalai meant that the worst was officially behind her.

“Hearing the words ‘no cancer’ after the pathology report came back was music to my ears,” said Stephanie. “It’s like the weight of the world had been lifted off of us.”

But there’s more to a happy ending than skilled surgeons and multidisciplinary collaboration. A patient needs a strong support system to get them down the road to recovery.

“Payton is an amazing young woman; she is intelligent, optimistic and resilient,” said Rellinger. “She benefits from two loving parents that have shepherded her through this experience and a close-knit community in London. We cannot underestimate the importance of dedication and perseverance of Payton, her family and the London community throughout her recovery process.”

A year later, Payton is thriving.

The recovery was rough, but after some minor dietary modifications and a medication to aid digestion, she’s back to being a normal teenage – hanging with friends and being active in her church youth group. She will undergo imaging for another five years to monitor for a reoccurrence or spread of the tumor, but so far, everything looks good.

“She just had her one-year MRI and Dr. Pandali said everything looked perfect,” Stephanie said. “Payton has learned and adjusted to a new way of eating habits and what works best for her body. She’s back to her normal self again.”

Payton recently celebrated her 18^th birthday with a bonfire and movie night with her closest friends. With the pain, fear and uncertainty behind her, she’s looking ahead to her future. Inspired by the nurses who helped her through her treatment and recovery, she’s planning to pursue career in pediatric nursing.

She takes one final look back, having gained the kind of wisdom that can only come from experience. She has some words of advice for others who are facing the terrifying unknown.

“Take things one step at a time,” she said. “Don’t let the ‘what ifs’ consume you and to be patient during the process.”

Stephanie is grateful to Rellinger, Pandalai, their surgical teams and everyone at KCH who made Payton’s surgery and recovery a success. But as far as she’s concerned, Payton is the real superstar.

“One thing I can say about Payton is, she is a young lady of strong faith,” she said. “She has taught me more than she will ever know about leaning on God and trusting Him when you are faced with adversity. She truly is my hero.”

UK HealthCare is the hospitals and clinics of the University of Kentucky. But it is so much more. It is more than 10,000 dedicated health care professionals committed to providing advanced subspecialty care for the most critically injured and ill patients from the Commonwealth and beyond. It also is the home of the state’s only National Cancer Institute (NCI)-designated Comprehensive Cancer Center, a Level IV Neonatal Intensive Care Unit that cares for the tiniest and sickest newborns, the region’s only Level 1 trauma center and Kentucky’s top hospital ranked by U.S. News & World Report.

As an academic research institution, we are continuously pursuing the next generation of cures, treatments, protocols and policies. Our discoveries have the potential to change what’s medically possible within our lifetimes. Our educators and thought leaders are transforming the health care landscape as our six health professions colleges teach the next generation of doctors, nurses, pharmacists and other health care professionals, spreading the highest standards of care. UK HealthCare is the power of advanced medicine committed to creating a healthier Kentucky, now and for generations to come.