COTA for Caleb's Journey

Our Story

Caleb is six years old and starts first grade in August. Caleb is a very active little boy who loves playing all sorts of sports including basketball, soccer, baseball, tennis and golf. He also enjoys swimming and playing with his little brother, Wesley (3), and other friends. Some of Caleb’s favorite activities include puzzles, arts and crafts, and building all sorts of things with legos, k’nex and magnatiles.

Caleb was diagnosed with Cystic Fibrosis as a baby and has been closely followed by a team of doctors. In January 2024, he had his first bout of pancreatitis, caused by his CF genetic mutations. Since his first bout in 2024, Caleb has been admitted 14 more times due to pancreatitis and other CF complications. He is a patient at the Cincinnati Children’s pancreas center, a program that children come from all over the world to see. The doctors have exhausted all minimally invasive options, where unfortunately none of them have left a lasting positive impact. He is on nerve medication 3 times daily to keep his belly pain at bay so he can continue to live a normal childhood. In March 2026, at Cincinnati Children’s Hospital, Caleb was evaluated as a candidate for the TPIAT (Total Pancreatectomy with Islet Auto Transplantation) surgery. He met with several different doctors and specialties, and it was determined that he was the perfect candidate for the surgery. His surgery is now scheduled for September 1, 2026.

Although overwhelming and scary, we know that this is the right next step for Caleb. During the surgery they will remove his pancreas, gallbladder, appendix, and possibly his spleen. Before removing his pancreas, they will harvest the islet cells that are responsible for producing insulin. At the end of the surgery, these cells will be injected into the liver in hopes that the liver will take over producing insulin. Because Caleb is still so young and his pancreas isn’t fully failing yet, we are hopeful that this surgery will be 100% successful and he will not become diabetic. It will be a long recovery, but he is ready to fight and has tons of family and friends in his corner ready to support him. We look forward to the day when Caleb doesn’t have to live with daily pain and we don’t have to live on edge in constant fear that the next hospital admission is right around the corner.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.