In the wee hours of Valentine’s Day 2019, around 2 AM Cristina woke up with belly pain. The pain at one point became so severe we made the decision to call an ambulance to transport her to the hospital. Upon arrival to the hospital, the doctors gave her a once over and all seemed to just be a scare. We even talked about how it was probably something as simple as gas and the doctor noted we could later joke about how gas caused quite a scare. Around 5am that morning, the doctor came in followed by another doctor and their faces were grim. He stated that this was in fact not a laughing matter and that Cristina was having a very severe Pancreatitis attack. Her Lipase levels were over 24,000! He stated he could not believe how she wasn’t curled up in a ball, that she was simply just lying there. A few hours later, still in the ER awaiting a bed, countless calls were flowing in from the doctors. One doctor called and stated that best case scenario, it was a rare complication of the flu (Cristina had tested positive a week prior) and that it would subside in a few days. They stated that they, however, didn’t think that we had the best-case scenario and believed we had the worst. They said they felt that this was likely either an anatomical problem or that Cristina could have a genetic condition causing it. We wouldn’t find out for months later that they were right, it was indeed genetic as Cristina has the CTRC gene. That was the beginning of a two-week hospital stay. The next day Cristina’s levels rose to over 30,000 and she quickly became sicker. We were told to prepare for the possibility of her organs shutting down as her body started to accumulate fluid including in her lungs. Thankfully a miracle occurred and things got better over the next several days. She was released on February 28 and we had hoped that this was behind us.
However, it wasn’t. September of 2019 Cristina awoke again with belly pain. Labs confirmed she was having yet another attack with levels over 27,000. The cycle has continued and most recently this year in 2022, Cristina has had 6 attacks from March to October. She has done the low-fat diet, takes pancreatic enzymes with meals and snacks, has had stent placement which was unsuccessful, and has missed over 50 days of school from March to October for 2nd and 3rd grade. Each attack leaves her weak and generally feeling run down for several weeks after. Because the attacks have been so close together this year, she is having a harder time bouncing back in between.
After meeting with her team of doctors at Cincinnati Children’s Hospital in October 2022, the doctors have decided it is time to remove her pancreas with Total Pancreatectomy with Islet Autotransplantation (TPIAT) Cristina will have her pancreas, spleen, gallbladder, appendix and a small portion of her small intestines removed. They will reroute her digestive tract and harvest the islet cells from her pancreas in the lab, which will then be transplanted into her liver, where the hope is that her islet cells will begin to work in the liver as they did in the pancreas. Following surgery Cristina will be a Type 3c diabetic and will require insulin through a pump.
Cristina will be in the hospital for a minimum of two – three weeks post-surgery. She will be in the PICU for about a week post-surgery and then moved to the diabetic floor for another week or so. After her release from the hospital, we will need to stay in Cincinnati for 4-6 weeks for follow up visits, testing, physical therapy and close monitoring. After we are released home, we will need to follow up every 3 months for the first year in Cincinnati for checkups, every 6 months for the second year, and every year for life following her transplant surgery.
As you can imagine, this surgery has significant expenses not only for the surgery and immediately after, but will be expensive in management lifelong for Cristina. We have partnered with the Children’s Organ Transplant Association (COTA) for assistance. 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. Each gift to COTA is tax-deductible to the fullest extent of the law.
We thank you for your support and kind donation to COTA for Team Cristina. Thank you for helping contribute to Cristina one day being Pancreatitis free!
About Cristina:
She is a very kind and happy 8-year-old. She’s in 3rd grade and is an avid reader. She loves to read so much she has a hard time putting a book down and prefers to read in one sitting. She has a very big heart for all animals and dreams of becoming a veterinarian one day. She has previously stated that she wants to be a vet so one day when an animal’s stomach is hurting them, she can take their pain away. She loves all things Pokémon and Disney. She also has dreams of one day playing in the World Cup and wants to pick up playing soccer again like she did before she got sick.
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.