'Overjoyed': Child Life Specialist Ashley Pagenkopf Reflects on Kidd's Kids Surprise for her Family
By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's
I do not have adequate words for the pure joy and humility I felt this past week. Our family was chosen to attend the Kidd’s Kids 2023 trip to Disney World and was surprised alongside another incredible, resilient family!
I was encouraged by some of the most incredible coworkers to apply for this trip. Over the past year and a half, these people have walked alongside our family with shared tears, unexplainable generosity and constant love. My husband and I were reluctant to apply since there are so many families and kiddos who 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. However, as I reached out to my friends and coworkers for advice and thoughts, I was only met with encouragement to put in the application. We had just decided to cancel our plans to go to Disney later this year due to finances, so we ultimately decided we should put in the application and see what happened.
Our middle daughter, Averly, was diagnosed with a low-grade glioneuronal (brain) tumor in April 2022 after having a seizure at home on March 29th. Our PCP, M. Kathleen Powderly, M.D. of Cook Children's Pediatrics Magnolia, 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 seeking opinions from all over the country.
This time last year, our daughter was headed into a nine-hour brain surgery to remove her tumor just behind her motor cortex that controls her right side. Her surgery was on Aug. 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 nearly 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.
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 conversations 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.
When we returned from our vacation, I was expecting to come home to news about our selection status with Kidd’s Kids, but we had no mail. I dreamt Sunday night that we weren’t accepted. So in worry, I reached out to Daniel D. Guzman, M.D., on Monday. While he didn’t have an answer for me, he did need our family for a photo shoot for Aim for Safety on Tuesday. It was only the second day of school, but I figured there wouldn’t be a better time and this would be a fun experience for the girls.
I pulled everyone from their lunch hours on Tuesday and we headed up to the hospital. He had told me there would be another family with us, so I wasn’t surprised to see Danny Peltier and his family. As we walked into the Child Life Zone, I could never have envisioned that moment.
So many precious faces staring back at all of us – “You’re going to Disney World!” It was the pinnacle of support and love! As I looked at my kids’ faces, my eyes blurred with tears.
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. #reality
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 Peltier’s daughter. As I surveyed the room, I saw all those who had loved and supported us from the first day with true extravagance! I was so overjoyed for my girls.
When I met Kidd Kraddick at Cook Children’s 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 – celebration of resiliency and choosing to say ‘yes’ to hard! We are deeply grateful and humbled for this opportunity!
Get to know Ashley Pagenkopf
Ashley Pagenkopf is a Child Life Specialist in the Emergency Department at Cook Children's Medical Center. The Child Life program at Cook Children's offers a variety of services, all designed to make your experience at Cook Children's the best it can be. Our services include educating, preparing and supporting your child through tests and procedures, as well as coping with any life challenges you and your child may face. Child Life specialists work with kids and families to make their visit to the medical center easier and more comfortable. We offer your child and your family an opportunity to express and work through any fears and concerns you may have. We'll also provide an explanation about what's going to happen during your visit and work with parents, brothers and sisters and other family members who may be involved in your child's daily care.