With major surgery already behind him, Boonville 10-year-old fights rare condition

Rayonna Burton-Jernigan, Evansville Courier & Press
·5 min read

BOONVILLE, Ind. − In many ways, Silas Guess is just an average 10-year-old boy.

A fourth-grader at Oakdale Elementary in Boonville, he loves playing the video game Minecraft and drawing anything, especially items from the different Minecraft worlds. When he's not drawing, he's spends time with family and friends or reading Greek and Egyptian mythologies.

But around the spring of 2020, Silas kept getting sick. And that April, he and his family got a diagnosis that changed everything.

He was diagnosed with chronic pancreatitis, a rare disease in children. About two out of every 100,000 kids get the diagnosis, according to the Cincinnati Children's Hospital.

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It usually starts with multiple episodes of acute pancreatitis, which involves intense upper abdominal pain, vomiting and nausea. Other symptoms can include diarrhea, trouble digesting food and jaundice, among others.

Silas Guess, left, hugs his mother Brandie Roca-Guess, right, as they celebrate his last day of school at Oakdale Elementary School in Boonville, Ind., Wednesday, March 8, 2023. Guess was having a pizza party with his classmates before heading to Cincinnati Children's Hospital for a TPIAT- Total Pancreatectomy with Islet Auto Transplantation where he will spend 10 -14 weeks in recovery. The fourth grader was diagnosed with chronic pancreatitis, a very rare disease in children, in April 2020. He was also diagnosed with Carnitine Deficiency, Nephrocalcinosis, Autosomal Dominant Polycystic Kidney Disease, and Focal Epilepsy and was approved for the surgery in August.

Following his initial diagnosis, Silas' life consisted of chronic pain, fatigue and numerous doctor appointments. He was also diagnosed with carnitine deficiency, nephrocalcinosis, autosomal dominant polycystic kidney disease and focal epilepsy.

After a few years of searching for ways to make life easier for him, the family found a solution. This past August, Silas became a candidate for TPIAT, or a total pancreatectomy with islet auto transplantation.

He had the life-changing surgery in March, months after he was approved for it.

"It's just improving his quality of life, giving him back his childhood and (getting him) to be in school with his friends," said his mother, Brandie Roca-Guess.

"... It's important to give him his life back."

Silas Guess plays tag on the playground for the last time this school year at Oakdale Elementary School in Boonville, Ind., Wednesday, March 8, 2023. Guess was saying goodbye to his classmates before heading to Cincinnati Children's Hospital for a TPIAT- Total Pancreatectomy with Islet Auto Transplantation where he will spend 10 -14 weeks in recovery. The fourth grader was diagnosed with chronic pancreatitis, a very rare disease in children, in April 2020. He was also diagnosed with Carnitine Deficiency, Nephrocalcinosis, Autosomal Dominant Polycystic Kidney Disease, and Focal Epilepsy and was approved for the surgery in August.

What Silas' surgery entailed

During surgery, doctors removed Silas' pancreas, spleen, appendix and gall bladder. And he had a transplant of islet cells, which help make insulin.

The surgery was pushed back a while because Silas was sick and doctors responsible for the treatment of his liver and kidneys wanted to be as thorough as possible.

His liver will now take over making insulin for his body with the transplant of islet cells. Until the liver starts its new function, Silas has a glucose monitor and insulin pump to regulate his blood sugar, while also taking numerous medications.

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He also has a feeding tube to help with supplements.

Silas Guess, 10, reads a card from his best friend Jace Parks as they celebrate and say goodby on his last day at Oakdale Elementary School In Boonville, Ind., Wednesday, March 8, 2023. Guess was having a pizza party with his classmates before heading to Cincinnati Children's Hospital for a TPIAT- Total Pancreatectomy with Islet Auto Transplantation where he will spend 10 -14 weeks in recovery. The fourth grader was diagnosed with chronic pancreatitis, a very rare disease in children, in April 2020. He was also diagnosed with Carnitine Deficiency, Nephrocalcinosis, Autosomal Dominant Polycystic Kidney Disease, and Focal Epilepsy and was approved for the surgery in August.

In the lead-up to the surgery, Silas and his mom traveled to Ohio, where he is treated at the Cincinnati Children's Hospital. He will be out of school for 10-14 weeks for recovery.

Major surgery like this can be a lot for anyone, especially someone so young.

"He's just 10 years old and he's been dealing with this since he was 7," Brandie said. "We want him to have a pain-free life and be able to do the things that normal kids can do and grow into being able to do these things without chronic pain as an adult."

A toll on the whole family

As important as it is to improve his physical health, she also emphasized working on his mental health.

Because he had to miss a lot of school and time with his friends, it took a toll on him. As well as the whole family.

His mother took a leave of absence from work to focus on taking care of Silas and her daughter, Indigo. The constant hospitalizations leading to isolation from school, slight fears of the impending surgery, and just overall mental strain.

Luckily, for the last few years, Silas has worked with a children's psychologist who specializes in medical trauma. She helped guide him through his surgery prep and all the difficulties that come along with his diagnosis.

"She has been a tremendous, tremendous help to him," Brandie said. "Just to kind of give him an idea of what's going to happen and how to better emotionally be able to handle those things."

Silas wasn't scared of the surgery. Much of that could be attributed to his psychologist or his best friend, Simon – or his emotional support animal.

Best friend Jace Parks, left, reads get well soon cards with Silas Guess, right, as they celebrate Guess’ last day of school at Oakdale Elementary School in Boonville, Ind., Wednesday, March 8, 2023. Guess was having a pizza party with his classmates before heading to Cincinnati Children's Hospital for a TPIAT- Total Pancreatectomy with Islet Auto Transplantation where he will spend 10 -14 weeks in recovery. The fourth grader was diagnosed with chronic pancreatitis, a very rare disease in children, in April 2020. He was also diagnosed with Carnitine Deficiency, Nephrocalcinosis, Autosomal Dominant Polycystic Kidney Disease, and Focal Epilepsy and was approved for the surgery in August.

It has been hard for her to watch her son go from the bright kid she knew to a more quiet and timid boy.

But with this surgery, she hopes it'll bring that light back to his life.

The journey ahead

Now six weeks post-operation, the family is adjusting to their new reality.

"It's been a very long road," Brandie said.

Silas has been readmitted to the hospital amid some complications, but is doing well considering everything he's had done. As he recovers, he and his mother have worked out a schedule that's convenient for both of them. Most of their days are filled with doctor's appointments, therapies and rest.

He has physical therapy three days a week and weekly appointments with the gastroenterologist, surgical team and endocrinologist to make sure his numbers are staying good and to see if he's healing properly.

A big shift for them is they are on a three-hour schedule where they are doing a range of things from taking medications to doing blood glucose checks or adding beads to his feeding tube.

Silas Guess walks the halls of Oakdale Elementary School headed to the office in Boonville, Ind., Wednesday, March 8, 2023. The 10-year-old fourth grader was diagnosed with chronic pancreatitis, a very rare disease in children that affects two out of 100,000 kids, In April 2020. Chronic pancreatitis usually starts with multiple episodes of acute pancreatitis, that involves intense upper abdominal pain, vomiting, and nausea. He was also diagnosed with Carnitine Deficiency, Nephrocalcinosis, Autosomal Dominant Polycystic Kidney Disease, and Focal Epilepsy. This past August, Silas became a candidate for TPIAT- Total Pancreatectomy with Islet Auto Transplantation.

As he is considered homebound in school right now, he only goes to school for about an hour a day. Sometimes he makes it only 10 minutes, depending on how he's feeling. His teacher is totally understanding of the situation.

The family partnered with the Children's Organ Transplant Association, a nonprofit organization that helps families and volunteers with training, assisting with event planning, communications and finding funding.

Everything done through them goes directly to Silas and his transplant care, and it will follow him for the rest of his life. Through the page, people are able to read blog posts, learn more about his story, and donate to him.

For more information on Silas's journey, check out his COTA page online.

This article originally appeared on Evansville Courier & Press: Silas Guess of Boonville, Indiana, is battling chronic pancreatitis