I’ve always admired my daughter’s determination. Whatever Attie is doing, she gives 110%. This passion spills over into her dance performances, academics, and even her battle with pancreatitis. So I shouldn’t be surprised that she is dancing the lead in her school’s production of the Nutcracker one year following a total pancreatectomy with islet auto transplantation (TPIAT). But I am in complete awe of her.
A Diagnosis of Pancreatitis
Pancreatitis has never slowed her down or stopped her from accomplishing anything, which is impressive given how serious her condition became.
It all started when Attie was four years old. She was having chest pain and her local doctor in Muskogee, Oklahoma, ran an amylase and lipase count. We were not shocked by her pancreatitis diagnosis, as both her dad and grandmother have the condition. One of our four children were likely to inherit pancreatitis, and we were mentally prepared for it, if and when it came.
We were referred to a few different medical providers to learn more about her condition and create a plan that would give her the best quality of life possible. One of her doctors ran a series of tests and confirmed that she had the PRSS 1 genetic mutation that occurs in some patients with chronic hereditary pancreatitis.
For years, we managed her condition by giving oral pain medications, restricting food intake and surviving on ice chips and popsicles. This method would work until she needed IV fluids and stronger pain medications during a pancreas attack.
Dancing Through Pancreatitis
Attie was born to move and groove. This was evident around age two, when she would perform dances on the fireplace. Her interest and love for it continued to grow, as we added practices, rehearsals, recitals and competitions to our schedule. She attends a performing arts magnet school and does tap, jazz, ballet—you name it.
Sometimes she would go from the hospital to the dance floor, or from the dance floor back to the hospital. This was our reality. For about eight years in a row, she would be hospitalized a couple of times a year for pain control. However, Attie was determined to continue dancing despite what was going on with her pancreas.
Sixth grade was a particularly rough year. She was hospitalized five times and her condition was getting worse. She had been missing practices, performances and auditions, and would even perform while sick. Then in the summer of 2017, she went from the recital stage to the hospital. We knew she wasn’t feeling well, but we didn’t realize how yellow she was until she was under the hospital lights. We learned that her pancreas was full of stones, blocking her bile duct. Additionally, her liver had stopped functioning. This was terrifying because her pancreatitis had never before affected other organs in her body.
Making our Way to CincinnATTIE
Her doctor referred us to the Pancreas Care Center at Cincinnati Children’s to see if she would be a candidate for total pancreatectomy with islet auto transplantation (TPIAT). Because she had been having severe, debilitating pain for more than six months and had been hospitalized multiple times within the previous year and unable to participate in her normal activities, she thought it might be a viable option for us.
We were scared yet hopeful. Scared because we were fearful of the unknown. This was new territory. Her dad’s and grandmother’s pancreatitis had never gotten this bad and the condition was controlling our lives. But we were hopeful that the pancreas team would be able to provide a solution for her deteriorating condition.
Drs. Nathan and Abu-El-Haija explained to us that TPIAT is a procedure that removes the pancreas, takes out the islet cells, and puts those islet cells back into the liver. Without a pancreas, she could develop insulin-dependent diabetes. The goal is for the transplanted islet cells to produce insulin in the liver. This could lessen or even eliminate her risk of developing diabetes.
Choosing Total Pancreatectomy with Islet Auto Transplantation
Choosing TPIAT was not an easy choice. We were provided with plenty of education to make an informed decision. Pancreatitis had been controlling our lives. We never knew when an attack would come. She was always sick and threatened by it. However, we realized that with diabetes, we could at least control it with insulin if she needed it. Also, we thought about the genetic mutation she has, which increases her risk of pancreatic cancer over the long term. Choosing TPIAT would significantly reduce that risk. We liked how that sounded.
So Attie performed the Nutcracker for nine straight days in a row (repeats) and then boarded a plane for Cincinnati (or CincinnATTIE, as we like to call it). She had the TPIAT procedure on December 18, 2017. The surgery lasted for 16 hours.
Showing Determination After TPIAT
The very first step she took out of bed was a plié. She couldn’t even speak—she had 20 cords attached to her—but she could move through ballet positions. Determination drove her to not only recover quickly, but get well enough to attend the last performance of the season, take part in a school trip to Washington, D.C. and attend our church’s social. TPIAT and pancreatitis were not going to get in the way of living her best life!
Within five and a half weeks, she did just that. She returned to Oklahoma, in time for the last dance competition of the season. She not only competed, but she did it with her feeding tube hidden inside her costume.
Attie is approaching the one-year anniversary of her TPIAT procedure. Over the last year, we’ve had to adjust our lifestyle by balancing her diet, making certain we plan ahead and carb-load her on days with hours of dancing. Most TPIAT patients are on an insulin pump for at least the first year as their islet cells learn how to function. But Attie is not on insulin at all. Her islet cells are working on their own. She looks so healthy–she has grown taller, her hair has thickened and she has color in her cheeks.
And most excitingly…drum roll please…she got the lead role in her school’s production of the Nutcracker this year! She is absolutely unreal. I’m in complete awe of her sheer determination and passion. Her good health has given her the opportunity to dream bigger dreams.
Should she go to New York and dance on Broadway? Or follow in her doctors’ footsteps to help other children with pancreatitis? When Attie is determined, the sky really is the limit.