In February 2021, Kennedy was hospitalized at Phoenix Children’s Hospital in Phoenix, AZ, with her first bout of severe pancreatitis. Having been diagnosed with cystic fibrosis at just one week old, Kennedy and her family were very familiar with Phoenix Children’s, but Kennedy had never been hospitalized there for pancreatitis.
For about a year after that, Kennedy was doing well, and we were hopeful that it was just a one-time occurrence. Then in April of 2022, Kennedy was admitted to Ann and Robert Lurie Children’s Hospital in Chicago, for another bout of pancreatitis while we were visiting family in Illinois. At that point, Kennedy’s situation was critical. Her lipase levels were rapidly increasing, with the highest level being 3500 (normal levels should not exceed 53). At that time, Kennedy was placed on a PCA (patient-controlled analgesia pump) because her pain was so unmanageable.
After a 10-day hospital stay in Chicago, we were able to finally get her lipase levels under control and bring Kennedy back home to Phoenix. Three weeks later, in May 2022, Kennedy was back in Phoenix Children’s Hospital for another bout of pancreatitis. She went on to have three more bouts of pancreatitis in 2022 and three in the beginning of 2023, all of which required hospitalization.
Wanting to find answers, we started exploring various pancreatic programs throughout the United States and found the pancreas care center at Cincinnati Children’s Hospital. Kennedy was assessed by the Cincinnati Children’s Hospital Pancreatic Center in April 2023, where numerous tests were run, including genetic testing. Kennedy has found to have a genetic marker (CPA1) that predisposes her to early onset pancreatitis, along with having cystic fibrosis, which can cause complications with the pancreas.
While we were at Cincinnati Children’s, the team also did an endoscopic retrograde cholangiopancreatography (ERCP), where they found permanent damage to her pancreatic ducts, resulting in a diagnosis of chronic pancreatitis.
In May of 2023, the pancreas care team at Cincinnati Children’s Hospital determined that Kennedy is a candidate for total pancreatectomy with islet autotransplantation (TPIAT), which includes the removal of her pancreas, spleen, appendix, and gallbladder. She will be having the surgery in September 2023. Kennedy and her dad will have to be in Cincinnati for eight to 12 weeks while she undergoes the procedure, recovers and attends post-op appointments in the weeks that follow the TPIAT surgery.
Because of the removal of the pancreas, Kennedy will now have Type 3C diabetes and will be insulin dependent (via an insulin pump). Once cleared to return home, she will be required to return to Cincinnati every three months for the next two years for her numerous medical appointments and even possible readmission into the hospital.
As Kennedy’s medical needs will require close monitoring, COTA will help Kennedy and her family with her ongoing transplant-related expenses, such as monthly medications and diabetic supplies, and ongoing travel expenses to Cincinnati.
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.