Kenley’s journey began in October of 2018. She was a happy, outgoing little girl in kindergarten. It was almost time to get her up for school when she came to our bedroom crying that her tummy was hurting. After she made it to our room, she began rolling around on the floor holding her stomach saying, “get it out, get it out, they’ve gotta get it out!” I was in complete shock and didn’t know what in the world was going on.
I got her to the doctor, and they ran some tests. It turned out that she had pancreatitis. Her lipase level showed over 20,000 (normal is 0-100). Our hospital told us that pancreatitis was super rare in children and it was probably just a one-time thing that wouldn’t happen again. We went on with our lives and things seemed great for Kenley.
Then, a year-and-a-half later, it happened again. At this time, she had recently gotten over strep throat and we were told that’s what may have triggered the episode. They said it was a fluke it happened twice, and they assured us once again that it shouldn’t happen again. Things were great until a year later when it happened again. At this time, I started demanding answers. They sent us to MUSC in Charleston. We were there for 10 days; she received a feeding tube and went through so much testing just for them to tell us it was idiopathic. Everything looked great and they didn’t see anything wrong. She then had another episode about 6 months later, and then 4 months later, and then it got to the point it was every two months.
I started researching and found Cincinnati Children’s. I called them up and explained the situation. They said they’d be happy to see us and scheduled an appointment. We went for a week while they ran many tests where we finally got the answers we had been waiting so long for. Kenley was diagnosed with pancreatic divisum. Basically, her pancreas wasn’t formed correctly. She is missing some ducts that run from her pancreas to her duodenum. The duct that she does have is extremely narrow, which makes it difficult for the juices to flow through without getting backed up. When it gets backed up it causes pancreatitis.
Kenley underwent 8 ERCP’s to do stenting to open up her duct. It worked for about a year. We thought: this is great; our girl is going to be good! This has worked. Then in March of this year, Kenley woke up in excruciating pain. We took her to the doctor and sure enough it was back, and it came back with a vengeance. Her acute episodes have turned into chronic and she’s been in pain every day since March 20th. Lipase levels have been up and down like a roller coaster. We have been in and out of the hospital. We have had to visit pain management multiple times. She has to take pain and nausea medication every single day. If she eats, she’s in pain. If she tries to play, she’s in pain. It’s truly heartbreaking.
A few weeks ago, she underwent an evaluation for the TPIAT surgery. We got the call after they all met and discussed the findings, and it was determined that the TPIAT was the best course of action. They have done all that they could do for her, and the TPIAT was the last resort. This surgery is a huge deal. We are essentially trading one health problem for another, but right now she has no quality of life. She can’t go to school. She can’t hang out with friends much because the pain is so bad. She really can’t do anything but be a couch potato. After surgery she will be a diabetic similar to a type 1. It’s called type 3. However, she will be pain free and you can live pretty much a normal life having an insulin pump. We just want her happy and healthy, and for her to be as much of a normal kid as she can be. We want quality of life for her.
Kenley is looking forward to this surgery. She’s been in so much pain for so long that’s she’s willing to do anything to get rid of it. Having the TPIAT will require us to relocate for around 3 months from our home in South Carolina to Cincinnati, Ohio, as Kenley’s medical needs will require close monitoring. Donations will help with transplant-related expenses such as, monthly medications and diabetic supplies, and ongoing travel expenses to Cincinnati.
Kenley is 12 years old and is a rising 7th grader at Moore middle school. She has 3 younger siblings, including a brother Carson (11) and two sisters Charlie (8) & Reese (5). Kenley is such a ray of sunshine and loves to make people smile. She has the most giving heart of anyone I know. She loves playing volleyball, swimming, putting together Lego’s, antiquing with her grandparents and going to church. Her favorite Bible verse is Matthew 5:16.
Despite having so much trouble with her health, Kenley maintained honor roll for the entire school year.
As of this time her surgery date is July 29th. There will be considerable expenses for our family during this time.
