Our family’s journey with childhood cancer started in April of 2009 when Casey was just 9 months old. Casey was a great, happy baby who we thought was experiencing some reflux. During an upper GI series a large tumor was found in his back behind his lung and our world came to a quick halt. Casey was diagnosed with neuroblastoma at A.I. DuPont Children’s Hospital in Wilmington, DE. He immediately received surgery to remove the tumor and a biopsy confirmed our fears. 

Casey received the best treatment and care from the oncology department at A.I DuPont. Our family was told that Casey was cancer free in December of 2010. It was the best Christmas present we could receive. Looking back on that long year and a half it seems like it was so long ago now. Casey’s mood never changed during all of the tests, needles and surgeries. He is always smiling and making others smile. 

As a military family we got comfortable with the cancer-free status and moved to San Antonio, TX in June of 2012. We picked up routine care at Fort Sam Houston Medical Center. Casey started school that year and was enjoying himself as a normal 4 year old. It was during one of those routine appointments and scans that our world turned upside down again and our family had to jump into cancer mode once more.

In April of 2013, four new tumors were discovered after Casey was tumor free for three years. Casey underwent surgery to remove one of the tumors that was easily accessible and testing came out favorable. The tumor did not have cancerous cells but a diagnosis was inconclusive.  We went for follow up care to the Texas Children’s Hospital in Houston and continue to scan for changes once a year. We have since moved to Joint Base McGuire Dix Lakehurst in New Jersey and are thrilled to be back under treatment at A.I. Dupont Children’s Hospital.

As a family and with guidance from Casey’s oncology team we have decided to wait and see what the scans continue to reveal. A decision to treat will be made when it is necessary. The break we have taken while monitoring the tumors has been much needed for Casey. He has been able to be a kid. He has enjoyed playing learning to play hockey, flag football, parkour and we even have hosted a few lemonade stands. Casey loves being a face of awareness for childhood cancer research. He is eager to share his story with others and bring awareness to the need for research involving children’s cancer treatments. He has also made significant progress educationally in the last year after struggling for a few before. We're not there yet but getting much closer. The decision to just wait hasn't been an easy choice, it weighs heavily on our family every day and we are very vigilant to any issues and changes in Casey’s health.  The doctors are rescanning for changes regularly and we will immediately do what is necessary if there are changes. Casey is scheduled for his next scans and imaging in August. 

Without Alex’s Lemonade Stand and the research that is being done on childhood cancer, we as well as many other families wouldn’t be where we are today. Alex's Lemonade Stand has become a part of our lives and I hope that we can continue to support the foundation as much as possible. Thank you ALSF for everything you have done and continue to do for these children who need you and your voice to speak for them.

Written by Jenny Desaulniers, Casey’s mom

Updated June 2018