Support Abby Burns through her TPIAT surgery

I am setting up this account for the Burns family! I am Celeste Farmer I met the Burns Family in Beavercreek, Ohio in 2012 when our youngest daughters were only 1 year old. Nancy, me & all of our kids get to see each other once a year! And it's just like we saw each other yesterday...true friendship.

Here is Abby Burns Health Story:

Chronic Pancreatitis is a very painful, debilitating, non curable, rare disease.

Abby began to complain of stomach pain around the age of 9. The pain was always in the same place and sometimes she would even be doubled over from it. We explored many other options and received many different diagnoses and procedures including anti-depressants for anxiety, prescriptions for an ulcer, an endoscopy, constipation, hernia, and many other appointments with doctors, most leading to dead ends.

Abby is a very passionate athlete who enjoys all sports but especially cheer, softball and basketball, but she has been sidelined with all the pain that has come with pancreatitis. It even has prevented her from being able to hang out with friends because she never knows when she would have a flare up and be in pain. Pancreatitis has also made going to school and studying very difficult. She is constantly trying to make up for work and learning things on her own that she missed in class.

Her story all made a dramatic turn when it was recommended that she have her gallbladder removed. Shortly after the procedure, she started to experience intense pain, and she was rushed to the ER. Once there they determined she had a bile leak, and a stent was needed immediately. She was rushed to Children’s Hospital, and it was at this time when we met Dr. Laborda; he is the one who has changed everything for Abby. He immediately diagnosed her with pancreatitis and has now given us the answers we have been looking for and given us a path to help to get rid of her pain. He ordered genetic testing which came back with the PRSS1 gene mutation which confirmed the diagnosis of chronic pancreatitis.

In June of 2024 she attended Camp Hope in San Antonio, Texas, for kids with chronic pancreatitis. The camp is made possible by Rebecca’s Wish and The National Pancreas Foundation. She said it was the best week of her life. She met friends who actually understand what she is going through. It’s hard to be 13, in jr high, navigating friends and be in chronic pain. Camp Hope provided her with so much hope, understanding and lifelong friends!

We are now waiting to go to Children’s Hospital in Cincinnati to meet with the team of surgeons and then we will know the exact date of her TPIAT. She knows this surgery is going to be hard, but knowing the pain will be gone, she is so ready!

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 15-17 hours to complete. Following the surgery, we are expecting Abby 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.

Abby hopes to one day be a nurse that helps kids with chronic pancreatitis. Thank you for your support! Please keep her in your thoughts as she navigates the next year and becomes that much closer to a pain free life!

Funds will be used for the following:

- Procedure and 6-8 week stay at Cincinnati Children's Hospital (insurance will be billed rought $1.1 million)

- Travel back and forth to Ohio for the consultation, procedure and appointments every 3 months for the first year after the TPIAT.

- Medicines and appointments following the TPIAT with transplant. Abby will need lifelong care and medicines.