Our Story

Avery has had tummy pains her whole life. In 2019, she was diagnosed with Celiac Disease and it all made sense, her pains were from that. No such luck. In Feb 2022, Avery was admitted for acute pancreatitis and subsequently diagnosed with Chronic Hereditary Pancreatitis due to a genetic mutation in her SPINK-1 and CTRC genes and Exocrine Pancreatic Insufficiency. The genetic mutations are the same mutations her little sister, Emmy, was diagnosed with 2-3 years prior. They completed an ERCP to remove some pancreatic stones and although they were able to get several stones out, they were unable to reach the tail of her pancreas due to the amount of damage that had been done to her pancreas. It was clear this damage had been happening over years and wasn’t a “new” diagnosis even though they had just identified it.  Avery had pain off and on over the next 6-8 months. In December 2022, her pain started to increase fairly quickly and we were back at the pancreas doctor trying to get it under control. In Feb 2023, Avery was hospitalized for pain control and fluids. She had her second ERCP to remove some more pancreatic stones, but it was again unsuccessful due to the amount of damage her pancreas has. Not having any other options they could offer us, we were referred to Cincinnati Children’s Pancreas Care Center in Cincinnati, OH, where they have the top pediatric GI team in the country. In April 2023, we flew out to visit Cincinnati Children’s. They are one of only two or three hospitals that perform the Total Pancreatectomy with Islet Autotransplantation (TPIAT) in children. We had many, many appointments, tests, and evaluations over a 5-day period.

On April 21, 2023, the Pancreatic Care team at Cincinnati Children’s unanimously voted that Avery was eligible for this life changing operation.

Avery is scheduled for the TPIAT surgery at Cincinnati Children’s Hospital May 22, 2023.

What is TPIAT?

  1. Total Pancreatectomy (“TP”) – This involves removing the entire pancreas and a section of the small intestine, then reconstructing the gastrointestinal tract. To prevent post-surgical complications, the appendix and gallbladder are removed. The spleen is also removed because of shared blood vessels with the pancreas. That is 5 organs; 4 complete organ removals and 1 partial organ removal plus reconstruction of the GI tract.
  2. Islet AutoTransplantation (“IAT”) – After the pancreas has been removed, an “islet isolation team” takes the pancreas to a laboratory where the islets are isolated and recovered. The islets have beta cells inside them. The beta cells are responsible for producing insulin. The team returns the islets they harvest from the pancreas and the surgeon transplants them into the liver.

Here is a video link that illustrates what’s entailed in this complex surgery. https://youtu.be/yJMmbZuVAJ0

The surgery takes roughly 12 hours to complete. Following the surgery, we are expecting Avery to be in the Pediatric ICU (PICU) for 1 week post-surgery and then on the diabetes unit for 1-2 weeks. Once discharged, we will stay in Cincinnati for an additional 6-8 weeks for follow up appointments and care. She will have a feeding tube in her abdomen for 2-3 months. She will also have a continuous glucose monitor and insulin pump, as she will be 100% insulin dependent for an unknown length of time, potentially forever. Over the first 6-12 months, we will get a feel for how the transplanted islet cells are performing, and this will ultimately determine the level of insulin dependency she will have long-term. She will continue to take pancreatic enzymes when she eats to help with food digestion for the rest of her life, which she has become accustomed to over the past year. She will be on daily antibiotics for 12 months to help with bacterial infections due to her spleen being removed.

But, even with all that, she should be off pain meds and pain free, running, jumping, and playing like an 11-year-old kid should be by the 12-month mark. She is ready to have her life back, start middle school, and take this world by storm.

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. COTA’s services are free to families, and gifts to COTA are tax deductible to the fullest extent of the law. COTA doesn’t charge a fee or keep a percentage so 100% of all donations made in honor of Team Avery are available for a lifetime of transplant expenses.

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