Noah is the bravest kid you will ever meet! Noah is not only brave, he is brilliant, hilarious and completely unique. Noah has been dealt a rough hand in life but has handled it with grace and the best attitude a parent can ask for. Noah also is known for his one-lined comments that just leave you stunned, laughing or both.
Noah was diagnosed with Chronic pancreatitis when he was 6 years old. Chronic pancreatitis is the worst! Think about having an epic case of stomach flu all the time, all day every day, and there is not a lot you can do to find relief. This is how Noah was living for most of his life. Although Noah was not formally diagnosed til he was 6, he has lived with these symptoms since he was a tiny, tiny baby. I mean “tiny, tiny” because due to his disease Noah struggled to grow and was always so behind the other kids his age. Chronic pancreatitis is a chronic inflammation of the pancreas. This causes the pancreas to become very painful and full of scar tissues that inhibits the pancreas to stop working properly. The pancreas creates enzymes that help break down our food so the body can absorb it. Noah’s pancreas was no longer able to produce those enzymes, so he was placed on medication to replace that function of his body. Those enzymes are so expensive! Dang, someone is making bank off us on refill day.
There are several questions we get asked a lot as parents with a chronic illness, the most common being, why did it take so long to diagnose Noah? That is the tricky part about chronic pancreatitis, there are just not a lot of doctors who are trained on the specialized endoscope that is used to diagnose kids. Can you imagine the frustration, knowing your kid is sick and not being able to find a doctor that can offer answers or even give a name to what your kid is experiencing? Yet through all the doctor visits and emergency room adventures Noah was always full of hope! The day Noah was finally diagnosed, I laughed! Here I was hearing that our son had a rare chronic condition, and I was laughing! We had an answer and of course it was something unique just like Noah!
The hope of Noah getting the help he needed was real and tangible. Little did we know that the road ahead was going to get a whole lot worse before it got better. After a few years of stenting almost weekly overnight hospital stays, it was decided the pancreas needed to come out. It was causing more harm than good, and Noah’s quality of life had become that of a throw pillow perfectly placed on the comfiest seat on the couch. Noah is full of energy and would use all his strength to play with his siblings knowing that he would end up in the hospital having jumped on the tramp or playing tag. Noah qualified for a TPIAT surgery in December 2023 and had the procedure in February 2024. Let me tell you about what a TPIAT surgery is, because you might just not believe it really is a thing. TPIAT stands for Total Pancreatectomy with Islet Autotransplantation — that sounds pretty nerdy, huh? During the surgery, Noah had his pancreas, appendix, gallbladder and spleen removed. The insulin making cells (Islet cells) are then removed from that dirty rotten no-good pancreas and transferred into the liver. The islet cells are transferred in hopes that one day they make insulin again and Noah will no longer be a diabetic. That seems made up right?
Noah underwent his TPIAT on Feb 12, 2024, and just a few short weeks after his surgery, he is thriving. The surgeon who performs this life-changing surgery resides in Columbus, Ohio — we live in UTAH! So let’s just say, we are going to become very familiar with the Columbus, Ohio, airport. This surgery requires years of follow-up care, which just adds to the already very costly surgery itself and those dang Enzymes are still needed …can you tell the price of those meds really bother me? anyway…Thank you for taking the time to read about our sweet Noah. He really is the bravest kid around.
Noah is hopeful for the future and cannot wait to get back to playing baseball and being a regular kid. Goodbye pancreas, we do not miss you!
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.