I first started this page at the end of John’s treatment for Stage IV high-risk Neuroblastoma when he was declared NED—no evidence of disease. Life felt beautifully ordinary again, and I stopped writing for a while, grateful for the calm and the return to normal.

Then, in August 2023, our world shifted once more. John was diagnosed with osteosarcoma in his left leg—a new primary cancer, unrelated to his previous diagnosis or treatment. I documented his brave journey, and our family’s, on his CaringBridge site. You can read about our amazing John here; https://www.caringbridge.org/visit/johngegen

On August 17, 2025, our sweet son completed his nearly two-year journey with osteosarcoma and left this earthly world surrounded by his family. While cancer never defined John, his journey was marked by courage, determination, and love. He did not lose a fight—he won in countless ways: in the relationships he built, the hope he carried, the joy he shared, and the love that will continue to guide us.

Though our hearts ache, we are grateful for every moment with John and for the support and prayers so many of you have shared with our family along the way.

Now, I’ve decided to begin journaling here again as we find our way through grief. Writing feels like a way to stay connected—to John, to the people who have walked alongside us, and to the ongoing story of love, loss, and healing.

Thank you for being here. I hope this space continues to honor John’s life and reflects the strength, grace, and love that he brought into ours.

We are The Gegen Five. John is forever and always in our hearts.

Below is my “About” entry from 2013.

Welcome! We are the Gegens and we are a busy family with three boys. Michael is 16, Jeffrey is 13 and John is 6.

My family is just coming out of the most trying year of our lives. Back in April of 2012 our youngest son John, was diagnosed with Stage IV High-risk Neuroblastoma. We were thrust into the world of cancer which included chemotherapy, surgeries, a stem cell transplant,  20 rounds of radiation, scans, bone marrow biopsies and antibody therapy treatment along with all those hospital stays, days away from home and other treatments. It was a year of devastation, determination, and triumphant. During this time I kept friends and family updated with John’s CaringBridge site. That site was essential in sharing information, but we also got so much back in return in the form of all the outpouring of support and love…giving us the strength and courage to keep on keeping on. I found that writing my thoughts and feelings…sharing John’s fight for his life, and our family experiences to be healing.

I am thrilled to report that John has been NED (No Evidence of Disease) since December of 2012 and he finished his current course of treatment this past May! With this new normal back into a life that we once knew, I find the need to update on CaringBridge pertaining to medical news about John to be much less (Yay!).While I still plan to update CaringBridge with all future scans information and as we move forward with a new clinical study that will hopefully prevent relapse, those journal entries will be less often.

As my writing on CaringBridge has become less often, I found myself missing it. I enjoy sharing our story and I want to continue to share it with our friends, families, and even the strangers that have been following us, praying for us and cheering Team John on! So many people have walked each step of this journey with us…It just didn’t feel right in my heart to just “stop”. This is a summer of fun and healing for the Gegens and if you want to, you are invited to come along!

Just a little side note: I am not a writer. I am just a mom, that through my son’s cancer diagnosis and treatment, discovered I enjoy journaling. This is our story for us and for those of you that would like to join us for all the good, bad and ugly. This is for my sons, when I am long gone they will be able to look back at our extraordinary journey together and remember….we did it….no mountain to high, no valley to deep….we got through it.. they can get through anything! They will also look back and see all the love that was wrapped around our family in those dark days and carried us through.  This is for them.

You will find errors in my writing. Auto correct can be a good thing….sometimes a bad thing. Sometimes I proof….sometimes I don’t.

Please be patient as I learn to navigate this new platform for writing.

Let the journey begin!

Love, Hope & Blessings,

The Gegens

Jon, Shelly, Michael, Jeffrey and John