Pancreas Care

Patient Stories | Roxy and TPIAT

Pancreas Surgery Gives Roxy Relief from Stomach Pain

Roxeann “Roxy” Howard complained about abdominal pain since she was 3 years old. After four years of struggle, she and her family came to Cincinnati Children’s, where they received the answers and treatment Roxy needed for pancreatitis. Today she’s a happy, active 10-year-old who enjoys drawing, painting, making slime and gymnastics.

Roxy Howard was in kindergarten when she looked at her mom, Rosa, and told her the stomach pain was too much to endure. She was tired of feeling worn out from being sick all the time. She made the heartbreaking plea that she just wanted to “go to heaven.” 

Rosa persisted in her efforts to find out the cause of Roxy’s pain. She pushed. She prodded. She wouldn’t give up on her daughter.

Emergency room visits elsewhere had resulted in multiple incorrect diagnoses for Roxy, ranging from constipation to the flu, all of which Rosa felt just didn’t add up.

“I had her at the ER a few times, and it was always passed over as a virus or something. I knew it had to be more,” said Rosa.

Her doctor in their hometown of Mascot, Tennessee, said Roxy’s case was beyond his expertise and referred the family to Cincinnati Children’s.

“I cannot brag enough about the team of doctors and staff at Cincinnati Children's,” said Rosa.  “From the first time I called and talked with the person who set up the appointments, to the first visits we had there, the care and concern for us was genuine and thorough.”

When Care and Expertise Embrace a Child in Need of Both

Roxy’s team of doctors from the Pancreas Care Center – including Maisam A. Abu-El-Haija, MD, Jaimie D. Nathan, MD, Tom K. Lin, MD, and Deborah A. Elder, MD – explained things clearly to the family so everyone understood the situation and the steps ahead.

“It was overwhelming at first with the size of the hospital. But when we talked to the doctors, and felt understood, that was very calming to me,” said Rosa.

It’s been three years since Roxy arrived at Cincinnati Children’s, and during that time she has had two procedures called Endoscopic Retrograde Cholangiopancreatography (ERCPs) (in August and October 2015), which proved unsuccessful, before she had surgery to remove her pancreas (a procedure called Total Pancreatectomy with Islet Autotransplantation (TPIAT) in November 2015.

The family was in Cincinnati for the pancreas removal and recovery at Ronald McDonald House for about two months, where they celebrated Thanksgiving, Christmas, her 8th birthday and New Year’s Eve.

“It became a second home to us and we have developed lifetime friends being there,” said Rosa. “It was very nice to be right next door to the hospital, and to have other children around who were facing obstacles too.  Roxy felt comfortable there and it was a great help in her recovery.”

Tests show Roxy is currently producing some insulin, but not enough to cover all day and meals. She remains on an insulin pump, and the family travels to Cincinnati Children’s for endocrinology follow-ups every three months. She has now progressed to yearly visits with her gastroenterology and surgery teams.

"If Your Kid Has a Problem, Take Them to Cincinnati" 

“While it is challenging some days with diabetes, it is much more manageable than the pain she was going through.  She can do many more activities now and is still learning how to manage it better,” said Rosa.

Roxy recalls how she started feeling better when she got home following her stay at the Ronald McDonald House.

“It helped being home because I got to see all of my family and be comfortable. I felt good when I got out of the hospital to the Ronald McDonald House, too,” she said. “Being unhooked from all the machines and the feeding tube, especially.”

Looking back, Rosa is grateful for many things, primarily the fact Roxy no longer requires regular pain medication, has gained weight and grown in height. But she’s also thankful for Cincinnati Children’s collaborative approach and the overall care her daughter received.

“The way that the doctors all work together and included me in decisions had a great impact on me,” said Rosa. “No one was ever out of the loop in her care and I was impressed at the amount of concern I saw from everyone.  The team of doctors really are a team and it made me feel more confident knowing that they make decisions together, even including me in rounds.”

“I feel like if we hadn’t come to Cincinnati Children’s we may have lost our child. We tell people all the time, ‘If your kid has a problem, take them to Cincinnati.’ ”