Going to Disney World: A Celebration of Resiliency
Going to Disney World: A Celebration of Resiliency and Choosing to Say ‘Yes’
By L. Ashley Pagenkopf, MS, CCLS
Child Life Specialist - Emergency Department
We all know that working at Cook Children’s can be magical! If you have had the joy of working here as long as I have or longer, you know that your co-workers are actually extended family. So, I shouldn’t have been surprised when many of them encouraged me to apply for the Kidd’s Kids trip this year. My husband and I were reluctant as there are so many families and kiddos that would benefit from a trip like this. I’ve volunteered and worked at Cook Children’s for two decades and have seen countless kiddos be chosen for Kidd’s Kids. I never thought I would ever be in a position where my own family qualified.
Our middle daughter, Averly, was diagnosed with a low-grade glioneuronal (brain) tumor in April 2022 after having a seizure at home on March 29. Our primary care provider, M. Kathleen Powderly, M.D. ordered an MRI in addition to many other tests, and within a week found the tumor. The same week, we were attending my grandfather’s funeral and grappling with shock and grief.
The next five months consisted of many doctor appointments to seek opinions from all over the country. This time last year our daughter was headed into a nine-hour brain surgery to remove her tumor, which was located just behind her motor cortex, which controls the right side of her body. Her surgery was August 24, 2022. Our neurosurgeon was able to resect 98-99% of her tumor. She had right-sided weakness and loss of feeling in her right foot and great toe following surgery; however, she has regained near all her feeling and is very strong. Following surgery, Averly has followed up every three months at St. Jude Research Hospital to monitor the small amount of residue tumor and will continue to follow up there indefinitely.
As a Child Life specialist, I have watched countless kids walk through similar and more difficult experiences. I have shared some of the most devastating moments with patients, siblings and families. Now one daughter was the patient and the other two were the siblings. All three of our girls have been so strong and resilient. Through moments of sadness and frustration, they have come out on the other side more beautiful and with deeper faith. Topics I never thought I would be addressing with them, though, have become normal conversation in our home – tumors, cancer, death, surgery, and countless stories of others we have met along the way. Averly has unwavering faith and has maintained an incredible sense of humor since her tumor (affectionately named Wally for his comparison to walnut-size) was evicted. My other girls have grown in empathy and flexibility. Yet, they are kids, and this has all been too much at moments.
The words “You’re going to Disney World!” took our whole family by surprise. Alongside the Peltier family, we received the most incredible gift! It was the pinnacle of support and love from the most amazing coworkers. As I looked at my kids’ faces, my eyes blurred. Averly had nothing but PURE joy and excitement. Emilynn, my oldest, was moved to tears and that just undid me – tears of joy and disbelief. My sweet Maelee was so confused and overwhelmed that she melted down. She was such a picture of receiving great news after hard times -- sometimes you just don’t know how to “step out of the hard.” Eventually it made sense to her, and I can report that she is THRILLED! Averly immediately bonded with the Peltiers’ daughter.
As I surveyed the room, I saw all those who had loved and supported from the first day of our journey with true extravagance! I was so overjoyed for my girls. When I met Kidd Kraddick a little over 20 years ago, I never imagined my future family would benefit from his love and legacy! This is going to be a trip of celebration for our family and all the other Kidd’s Kids families – a celebration of resiliency and choosing to say “ ‘yes’ to hard!” We are deeply grateful and humbled for this opportunity!