Our mission with Aiden’s Light is to raise awareness about Diffuse Intrinsic Pontine Glioma (DIPG), raise money for research into a cure for DIPG and other childhood cancers, and to support families financially and spiritually who are directly affected by DIPG and/or other childhood cancers.
All we are is messengers, errand runners from Jesus for you. It started when God said, "Light up the darkness," and our light filled up with light as we saw and understood God in the face of Christ all bright and beautiful. -II Corinthians 4:6
Aiden, was born January 25, 2012, and was diagnosed with DIPG at the age of 3 on October 5, 2015. Aiden began experiencing vision problems, behavioral problems, and headaches. This led us to an MRI in which the tumor was discovered. Aiden began treatment at St. Jude Children's Research Hospital in Memphis, TN. For 6 weeks, Aiden went through radiation, along with a clinical trial oral chemotherapy. Before beginning treatment, Aiden had surgery to place a subcutaneous power port for daily sedation, and also an ETV (Endoscopic Third Ventriculostomy) to prevent hydrocephalus in the brain.
In April of 2016, Aiden received an experimental treatment in Bristol, England, in which she underwent a 9 hour brain surgery to install the Convection Enhanced Delivery (CED) system of catheters to directly administer drugs into the tumor. Our family traveled each month from April until November of 2016 in order for Aiden to receive monthly infusions to continue shrinking the tumor.
In November 2016 we discovered that her tumor in the brain stem was stable but that cancer cells had traveled to her cerebellum, and she was not longer able to receive CED. Aiden then received an additional 10 sessions of radiation at UCSF Benioff Children's Hospital in January of 2017. She also had a NG tube placed. Aiden returned home right before her 5th birthday and enjoyed her time at home with family and friends until she passed away at home on June 4, 2017.
Aiden survived 20 months past diagnosis and lived her life full of joy, laughter, and a determination that was fierce. Aiden once told me, "I think I want to see Jesus," and we know that is who she is with now.
Our family lives in a small rural town called Monterey, Louisiana, in which we are raising Aiden's little brother, Rustin, and her little sister, Ronnie Anne. Our family has been through devastation, but we are here to help families through their cancer journey. The Lord has been good to us, and has blessed us in far too many things to count, but with this foundation, we hope to share our faith and bring hope to a hopeless situation. We were unaware of what DIPG was and the lack of treatment and funding that goes with it. Knowing what we do now, our mission is to make huge changes in the DIPG world, and other forms of pediatric cancer. Even in our grief we know that God is good and we have hope that can move mountains.