September 25th is a very special day to our family. 2 years ago on this very day John received tons and tons of healthy stem cells to jump start his system once again. While it was probably one of the scariest times for our family throughout his treatments, as we knew the risks John faced …and before he got better, he became very, very ill….the stem cell transplant meant hope. Hope for a future without cancer, without neuroblastoma. 

On September 25, 2012 our family, along with all the grandparents,  gathered around John’s bedside as the hospital Chaplin gave a blessing. In true John style…he plugged his ears for the entire process. When it was the actual time for the stem cell transplant (a quick procedure that takes about 10 minutes) the grandparents were all set to watch on Skype from the patient lounge while the five of us were in the room. Almost instantly John began to throw up and the Skype was over. Balloons and gifts were given as this was a truly special day…a second birthday. John could have cared less about all the fanfare, the intense chemo prior to the transplant had wreaked havoc on his 6 year old body.

John entered the hospital on September 18th and came home on October 16th. He is one tough kid!

Here are a few pictures from his stem cell transplant days:

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We have been talking to John about this special day and he has had a “Whatever” attitude about the whole thing. While with me this afternoon/evening he was taking full advantage of the day. After hockey, “Will you get me a milk shake? It is MY day you know.” When asked what he would like for dinner and looking forward to eating out myself…the response, “I want Mac and Cheese. It’s my day.It’s like a birthday.” Mac and Cheese it was. He did his best to tease his dad that no one else was around on his special day(It was one of those evenings.). There will now be a proper celebration with the “Celebrate Plate” and all this weekend.

While we are ever so thankful for the blessings of John’s health, we hurt for other families. Last night I learned of 2 more children being taken by neuroblastoma. One was Princess Emma and the other a little boy who’s story I have followed for the last year. I was rattled. I was a mess.

I was a mess because my heart hurts so badly for those families. I can not fathom the pain and heartbreak they must be feeling. I pray for peace and comfort for them.

I was a mess because news of children passing from neuroblastoma scares the crap out of me and fills me with fear.

John’s battle and the news of Emma and other children passing from childhood cancer makes me question ..How am I going to live me life to make a difference? How can I help?  Where can I make an impact?

My life is definitely a work in progress. What do I know for sure? I know life can change in an instant. I know life is too short to sweat the small stuff (Seriously!). I know that we should love and live with hearts bursting with gratitude and grace. Do I do all of these things 100% of the time? No, but I can quickly remind myself what is really important and try to snap out of it.

Love, Hope and Blessings,

Shelly

Special prayers for our friend Kathy.

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 800days.org.

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.

http://www.childrensmn.org/news-and-events/blogs/giving-news-and-highlights/johns-story

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

A 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,

Shelly