Coles Goals 2024

Cole Joseph Princehorn was born on November 30^th, 2020 and seemed to be a healthy thriving baby. Unfortunately, at his two-month appointment, concerns heightened surrounding his continued jaundice. Our pediatrician immediately ordered labs and we rushed him to get blood tests. The call we would get a short couple of hours later would send us on the most frightening and difficult journey we could have ever imagined. The tests found that Cole’s bilirubin count was alarmingly high, and we would need to get in front of specialists immediately.

 We were rushed to CHOP, and Cole started to undergo a variety of tests all indicating to an issue with his liver. It was very apparent that this was a serious problem. After a lengthy hospital stay, all the tests and imaging concluded that a procedure would be the only way to truly identify what was going on with Cole’s liver. That procedure turned in to a 7-hour surgery where it was found that Cole had no ability to drain bile from his liver to his intestines. He was diagnosed with Biliary Atresia, a rare liver disease that we had never heard of.

The next 15 months would be unimaginably difficult, and things would only get more challenging. In late May Cole started to suffer from ascites and was admitted for his 10th hospital stay. The frightening reality of the situation became unfortunately clear. Cole would need a liver transplant. During that same stay, Cole would have a major GI bleed resulting in contracting sepsis and septic shock that would escalate the need for the transplant to save his life. On July 8th, 2022 our prayers were answered and he received his life saving liver transplant. We were discharged from the hospital 68 days later and finally could take our son home. We finally hoped we could experience a life without non stop medical attention. More importantly, Cole could be just enjoy being a kid. 

Everything was wonderful until his routine lab work pointed out an atypical drop in his hemoglobin. We were rushed to the emergency room for further testing and later admitted. After multiple tests, our team confirmed another bleed from ulcers on atypical nodules in Cole's GI track. The pathology on these nodules confirmed that he was positive for PTLD, a rare form of lymphoma found in transplant patients who are positive for the Epstein-Barr Virus. Cole started Chemotherapy in December of '22 and completed his sixth round on April 16th, 2023. 

Thanks to the amazing people at CHOP, Gift of Life, and most importantly his donor and her family,  Cole is now cancer free. He is a thriving, happy and energetic 3 year old big brother. He continues to make amazing progress and continues to take steps in the right direction. There will be challenges and concerns ahead, but thanks to everyone at CHOP, we know we will always have fantastic people in our corner and the support from the best team for Cole and our family we could ask for.

Cole’s Goals was created to help raise awareness about Biliary Atresia, other liver diseases and to fund raise for The Children’s Hospital of Philadelphia’s Liver Research Foundation. We cannot thank everyone at CHOP enough for their continued commitment and dedication to our son.