September 19, 2020 \u2014 our one bad day.<\/p>\n\n\n\n
Taylor was taken to the nearest emergency room with severe stomach pain and nausea. She was rarely ever sick, so we knew something wasn\u2019t right and took it very seriously. After repeatedly requesting an ultrasound\u2014and following a staff shift change\u2014the doctor finally agreed. I will never forget the moment he walked into the room and said, \u201cTaylor has something called pancreatitis, and we need to transport her to Children\u2019s Hospital.\u201d<\/p>\n\n\n\n
That day became our \u201cone bad day\u201d\u2014a day we will never forget. During the transport and early days at Children\u2019s, we learned this wasn\u2019t 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\u2026we had the same confused look you\u2019re imagining.)<\/p>\n\n\n\n
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\u2014anything over 180 meant she was in trouble. We saw her numbers climb into the 28,000s. 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\u2014but Taylor did.<\/p>\n\n\n\n
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\u2019s when stents became part of the plan. For about 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.<\/p>\n\n\n\n
Despite everything, Taylor continued to thrive. She maintained A\u2019s and B\u2019s 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\u2014showing 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.<\/p>\n\n\n\n
Fast forward to 2025. After attempting to live without stents, it became clear that it wasn\u2019t a sustainable option as the pain returned. Once again, her Colorado medical team met us with solutions\u2014but the reality was that Taylor needed more. The episodes and pain has become worse. The screams of pain like you\u2019ve 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. <\/p>\n\n\n\n
That\u2019s when doctors suggested an evaluation at Cincinnati Children\u2019s Hospital for a TPIAT (Total Pancreatectomy with Islet Cell Autotransplantation). This extremely complex surgery\u2014scheduled for April 21, 2026\u2014will last approximately 10 hours. The plan is to remove Taylor\u2019s 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.<\/p>\n\n\n\n
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\u2014another major learning curve. Our initial stay in Cincinnati will last several months while Taylor receives the specialized care she needs.<\/p>\n\n\n\n
With the support of your donations to COTA for TJ the Pancreatitis Warrior, our family will be able to focus on Taylor\u2014without the overwhelming financial stress that comes with a surgery of this magnitude and the long recovery ahead. Our hope is for a successful surgery that gives Taylor the chance to live a more \u201cnormal\u201d life, with fewer unknowns, less pain, and\u2014of course\u2014getting back out on the rugby pitch.<\/p>\n\n\n\n
Please follow Taylor\u2019s journey here and by using #TJthePancreatitisWarrior \ud83d\udc9c<\/p>\n\n\n\n
The Children\u2019s 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\u2019s 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\u2019s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.<\/p>\n","protected":false},"excerpt":{"rendered":"
September 19, 2020 \u2014 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\u2019t right and took it very seriously. After repeatedly requesting an ultrasound\u2014and following a staff shift change\u2014the doctor finally agreed. I will never forget […]<\/p>\n","protected":false},"author":5,"featured_media":87,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-14","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"\n