I began The Gegen Five WordPress site way back in 2013 when John completed COG (Children’s Oncology Group) protocol for stage IV High-Risk Neuroblastoma and was moving on to a clinical trial, the goal being to prevent relapse. He was so little back then at just six, but had already proven to the world what a resilient and courageous warrior he was! Prior to this website, I had been using CaringBridge to keep family and friends updated on John’s Neuroblastoma journey. This site seemed a good landing place to continue to share John and our family non-medical updates, and for the next four years I did just that.

With the busyness of all the activities that comes with 3 active boys, my writing tapered off and then ended completely. In early summer of 2023, I received a notification that my renewal fee for WordPress was due. After 8 years of paying the fee and not using the site (Don’t tell my husband!), I hesitantly closed the domain. I was able to have the posts I had written bound into a beautiful hardcovered book, and I had thought I had closed the chapter on sharing our story through my writing.

Sadly, in late August of that very same summer we learned that John had osteosarcoma in his left leg. Shocked and devastated, we were told this cancer was unrelated to Neuroblastoma and considered another primary cancer. I was back to writing on CaringBridge to keep all those that cared for John and our family updated on this new journey. You can find those posts here: https://www.caringbridge.org/visit/johngegen

At the age of 18, just a day under one month from John’s 19th birthday, our sweet boy passed away on August 17, 2025. John left this world surrounded by his family, wrapped in our love, as he passed on to heaven. The experience was devastatingly heartbreaking, beautiful, and peaceful all woven together as one.

So here I am again—back to WordPress and back to writing. Sharing my feelings has always been healing for me, and I can feel myself needing that healing now more than ever. We all are. We loved John so deeply, and because our love was so deep, our grief is just as deep. If you would like to follow along on this messy, sometimes complicated, but always love-filled journey, this is where you will find my love for John and our family, my relationship with grief, and hopefully many joy-filled moments along the way.

Back in 2013, I titled this blog The Gegen Five, and my heart needs it to stay that way. John is always with us—forever a part of our original five. We’ve since been blessed with two beautiful additions, our sweet Nena and Emma, and I know they would only cheer on keeping the name. It’s a piece of our story, our love, and our family, – always.

Love, Hope, and Blessings

Shelly