September 19, 2020 — our one bad day.

Taylor was taken to the nearest emergency room with severe stomach pain and nausea. She was rarely ever sick, so we knew something wasn’t right and took it very seriously. After repeatedly requesting an ultrasound—and following a staff shift change—the doctor finally agreed. I will never forget the moment he walked into the room and said, “Taylor has something called pancreatitis, and we need to transport her to Children’s Hospital.”

That day became our “one bad day”—a day we will never forget. During the transport and early days at Children’s, we learned this wasn’t something as simple as removing an organ and healing, but also not something with a clear or easy fix. We were asked countless questions, the most memorable being whether Taylor had been bitten by a scorpion. (Yes…we had the same confused look you’re imagining.)

That first year brought hospital stay after hospital stay. More tests. More questions. One of the clearest indicators that TJ was in a pancreatic episode was her lipase level; anything over 180 meant she was in trouble. We saw her numbers climb into the 28,000’s. Our child would scream as waves of pain hit her, pain often compared to active labor. She was only nine years old. No child should wake up in the middle of the night screaming in pain—but Taylor did.

As time went on and the episodes became more frequent, her diagnosis changed from acute to chronic pancreatitis. Her incredible medical team in Colorado kept us informed and did everything they could with the tools available. That’s when stents became part of the plan. For a year, every eight weeks or so, our brave girl underwent ERCP procedures to place stents. We knew each procedure could trigger another pancreatic episode, but the stents also provided much-needed day-to-day relief.

Despite everything, Taylor continued to thrive. She maintained A’s and B’s on her report cards and stayed involved with her local rugby club whenever possible. She would literally go from the hospital straight to the rugby pitch—showing up for her teammates and proving to them, her opponents, and herself that she is truly a force to be reckoned with. TJ even tried out for a competitive rugby team representing the USA Western Division in international tournaments, once again proving that a girl with chronic pancreatitis could do anything she set her mind to.

Fast forward to 2025 Taylor is now 14. After attempting to live without stents, it became clear that it wasn’t a sustainable option as the pain returned. Once again, her Colorado medical team met us with solutions—but the reality was that Taylor needed more. The episodes and pain had become worse. The screams of pain like you’ve never heard before. The sight of tears streaming down her face. The begging of stopping by a fire department for help because the thought of a 40 minute car ride to the hospital was too much to bear.

That’s when doctors suggested an evaluation at Cincinnati Children’s Hospital for a TPIAT (Total Pancreatectomy with Islet Cell Auto transplantation). This extremely complex surgery—scheduled for April 21, 2026—will last approximately 10 hours. The plan is to remove Taylor’s pancreas, spleen, appendix, and gallbladder; reroute her intestines; and transplant her islet cells into her liver. The goal is for those transplanted islet cells to function as her pancreas and produce insulin.

This is no easy task. Every pancreatic episode, every ounce of pain, and every moment of sickness has damaged or destroyed some of her islet cells. Following surgery, Taylor will become a Type 3c diabetic (similar to Type 1) and will be Creon-dependent to help digest fats and proteins—another major learning curve. Our initial stay in Cincinnati will last several months while Taylor receives the specialized care she needs.

-Update

As of today, we are 6 days post op from the TPAIT. The transplant surgery took almost 11 hours. They removed her pancreas, gallbladder and appendix, but were able to save her spleen and reattach it, along with the stomach and bile duct, using her intestines. While the pancreas was removed, specialized teams isolated the insulin-producing islet cells and transplanted them into the liver. She is now considered Type 3c diabetic.

Aside from the TPAIT, Taylor had some internal bleeding this week coming from the right abdominal area. A CT scan showed a large pool of blood that had to be drained. She was sent back up to the OR for exploratory laparotomy. They drained 2 liters of coagulated blood out of her body, and she ended up having 5 blood transfusions over a 24 hour period.

She is back in PICU and we are hopefully on the road to recovery. They expect her to be able to move to the main floor once midlines and catheters are removed. The team is working around the clock to dial in everything; feeds, pain meds, antibiotics, insulin, etc. Hopefully we will begin the process as a family to figure out this new norm. Our schedule for the next 8 weeks consists of post TPAIT procedure care as well as patient education and training on diabetes technology, nutrition and insulin. Also, Taylor will need to travel back to Ohio several times a year to follow up post TPIAT to ensure her health is moving in the correct direction.