Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month and the Gegens have been doing a little to help raise awareness.

Because of Ezra : From their website:

Children just like Ezra are diagnosed with neuroblastoma and other solid-mass pediatric cancers every day. We seek to fill some of the large gaps in pediatric cancer research funding and focus on these solid-mass cancers. Our goal is to raise money to support relevant research and clinical trials with physicians and researchers who can help make a difference in survival today.


We are committed to knowing the neuroblastoma research landscape and specifically funding patient-affecting trials and research. Over 90% of our proceeds go directly to research – and we have no paid staff. You can watch stories of children being treated on the actual trials we’re helping to fund at


John is one such child benefiting from  Because of Ezra’s dedication to finding a cure for Neuroblastoma. In late August we sat down and shared John’s story.

(Just a side note: When I speak in the video of our experience with DFMO, Choosing DFMO or not doing DFMO…I am speaking of what Jon and I felt was best for John…for our family and we respect whatever decisions other families make.)


Also in August we were asked to meet with a representative from Children’s Hospital and share John’s story of giving. Just click on the link to read the story on Children’s blog.


Last Saturday we went to the 35W bridge in Minneapolis that was lit Gold in honor of Childhood Cancer Awareness Month!



FundraiserA friend of mine came up with this amazing idea for a fundraiser to spread awareness of childhood cancer and to spread a little sunshine on the kiddos that are fighting it. Please consider donating money for a bag or even go in with a group of friends on a bag. (If you got enough people to go in on a bag it would only be a few dollars apiece.) John is hoping he has many bags to pass out at his old stomping grounds!

If you or a group wish to purchase a bag, you can contact Caitlin at the number on the flyer or you can mail $ to me at :

Shelly Gegen

1402 Jefferson Street

Hastings, MN 55033


This goofy kid….turns 8 tomorrow(16th)! September 25th will be the 2 year anniversary of his stem cell transplant! He’s come such a long way. John is a daily reminder of how fortunate our family is and what really is important in life. Tonight I tucked him into bed and shared his birth story (the good parts). I practiced my rendition of the birthday song I was threatening to barge into his classroom and sing. After Jeffrey’s look of disgust, I’ve since promised to steer clear of Mrs. Rickert’s room. Gotta love my boys!




While life seems the closest to normal for us as it’s been in a long time, there are many children and families hurting. 2 families this past week were told there is nothing more that can be done for their children who have been fighting relapsed Neuroblastoma.  I can not even begin to imagine the heartbreak. Much love and tons or prayers for them.


Love, Hope and Blessings,



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