Burrell's Elijah Goulet faces complex surgery for chronic pain, inspires community with resilience

Elijah Goulet excels at many things inside and outside the halls of Burrell High School.

The 16-year-old from Lower Burrell shines in the school’s band, as a leader and mentor to many younger students. A junior, Goulet is an avid reader, a member of the reading team and aspires to attend college.

You wouldn’t know he is plagued with intense pain because of chronic pancreatitis.

“It’s the worst pain I’ve ever felt,” Goulet said. “If I’d have to rate it on a scale up to 10, I’d say it’s usually anywhere from a 5 to 9, and I have a high pain tolerance as well.

“It usually feels like a mix of a huge cramp and stabbing pain, and it’s usually always in the abdomen (or) navel area.”

Most days, he is able to function normally. But what he calls “mini-attacks” can cause him to miss a few class periods. Other days, however, the pain causes him to miss school completely. The pain sometimes is bad enough to keep him from sleeping.

“I’ve gotten able to bear it and be able to do stuff,” he said, “but it’s not fun to do stuff in pain.”

Surgery planned

An hourslong surgery at Cincinnati Children’s Hospital on Nov. 19 might ease his pain. He’s scheduled to undergo a TPIAT, which stands for total pancreatectomy with islet autotransplantation. The procedure is available at only a few hospitals nationwide for patients who are Elijah’s age, hence the trip to Cincinnati.

Surgeons will remove his pancreas, spleen, appendix and gallbladder — and reroute his gastrointestinal tract.

”It’s a very complex and long procedure,” Goulet said.

Once the pancreas is removed, surgeons take it to an onsite islet laboratory where the cells are isolated and recovered, said Dr. David Vitale, a pediatric gastroenterology specialist at Cincinnati Children’s Hospital.

Islets contain cells that produce insulin. A surgeon will transplants the islets into Elijah’s liver, with the goal of those cells producing insulin in the liver as they did in the pancreas to help control blood sugar levels.

Goulet was diagnosed with acute recurrent pancreatitis in 2019 and has been hospitalized more than 13 times for the disease. His condition was ruled chronic about five months ago. He also is a carrier of the cystic fibrosis gene called CFTR.

“The inflation of the pancreas is my cause of pancreatitis,” Goulet said. “Most people that get it are adult alcoholics. It’s very rare to not get it from alcoholism. It’s even more rare for children to get it.”

He has undergone numerous medical procedures to try to ease his chronic pancreatitis but none was successful, leading the family to elect a more complex surgery.

Undergoing the surgery, Goulet said, would alleviate pain and most likely help him avoid diabetes.

Ultimately, it would improve his quality of life.

Goulet and his family have been in contact with Vitale. Conversations with him, and other patients who have undergone the surgery, have helped to quell concerns, Goulet said.

“Dr. Vitale is very personable,” Goulet said. “I speak highly of him as a medical professional. He’s been very helpful in explaining what’s going to happen.”

Vitale said Cincinnati Children’s Hospital has done more than 140 TPIAT surgeries in patients as young as 3.

“It’s been really beneficial to the patients that need it,” Vitale said.

Pediatric chronic pancreatitis is “fairly rare,” he said, adding only about one or two children in 50,000 have it.

After surgery, Goulet will recover in the hospital’s pediatric intensive care unit. The family will remain in Ohio for about four to six weeks after leaving the hospital. While he heals, Goulet will move to the diabetes unit, where an endocrinologist and a diabetes education team will instruct him and his family about the disease.

Fundraising proceeds via an online website will benefit the Children’s Organ Transplant Association in honor of Goulet to assist with transplant-related expenses.

‘Good friend to so many people’

Goulet has been into music for as long as he can remember. That love of music led him to join Burrell’s band program.

Band “changed my life for the better,” he said.

“I wouldn’t be anywhere close to where I am today if not for my teachers and friends and band,” he said.

Band director Michael Pagnotta said he met Goulet when he entered the band program in fourth grade. He originally played the saxophone but moved to percussion instruments, where he quickly thrived.

“He’s always been very kind and a little introverted,” Pagnotta said. “As he’s gotten older, he’s become a leader in the band.”

Goulet never shies away from difficult tasks and has become a mentor to younger students, Pagnotta said, adding the Burrell community is eager to help him with whatever he may need.

“He’s such a good person, a good student and a good friend to so many people that the community cares about him and wants him to be well, no matter what it takes,” Pagnotta said.

In addition to band, Goulet is on the school’s reading team, the Burrell Bookaneers.

“He’s a great kid and a fast reader,” said Megan Aranyos, librarian and reading team sponsor. “We have the same taste in books, and we prefer to read fantasy novels. It’s been cool giving each other reading recommendations.”

Aranyos said she hopes that reading has helped Goulet in his personal life and in dealing with stress related to his medical issues.

Support for Goulet extends outside the school district.

In fall 2023, Goulet worked at Rudy’s Table in Lower Burrell for several months before his illness became too debilitating.

“He is really a hard worker,” said Becky Rudy, owner of Rudy’s Table. “He really wanted to work. He wanted to make his own money like every teenager.”

Rudy’s Table set up a donation box for the family at the restaurant, 191 Hillcrest Shopping Center. Rudy said it’s a no-brainer to support a former employee, and Goulet’s family are frequent customers.

“I feel bad he’s going through all of this,” Rudy said. “At the same time, we want to support him.”

Goulet is thankful for the support from the community and how accommodating his school district has been throughout his plight — everyone from teachers, to administrators, to students and the front office staff.

He has a simple message going forward.

“If someone doesn’t tell you they have (pancreatitis,) you wouldn’t know,” Goulet said. “People can mask pain.

“Be helpful and kind and caring to people no matter what.”