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20 Months NED

First and foremost, Spencer is great!  He is 20 months NED, in the 3rd grade and is doing good!  His orbit is still healing so no talk of a prosthetic yet; however we are getting close.  The docs are not worried about how long the process is taking because he has had such a large amount of radiation to the area (Proton and seeds after the exenteration).  I can't believe next month will mark the 2 year mark since that surgery.  Crazy!

Ok...so here comes the bad news.  But don't worry, it is not about us.   It is about this shitty world that involves cancer!  Sue Guenther, a dear friend that found us through CaringBridge passed away a few days ago from cancer.  One of our favorite child life specialist is in hospice from a relapse with her breast cancer.  And...the first person/family we met in the hospital, Jette (i think he was 8 or so) who had Ewing's in his ribs has relapsed after 4 years of NED!!!  WTF?  I HATE THIS!!!

I am celebrating the fact that Spencer is alive and well but the fear is overwhelming at the moment!

However, the good side of this is being able to be there for others.  I recently had a mom reach out to me because her 3 year old son has been dx with spindle-cell sarcoma in his left eye and has to have the whole orbit removed like Spencer.  So I am fortunate to have walked the path and give hope and strength to others when they need it.  But what I would do not to have ever been thrown into this world...it sucks!!!  And with that said, I really need to update "my story" and pictures so when people to read our story, they have hope to read about.

All I can say is please...enjoy life, love your family and friends and love yourself!  Be thankful for what you do have.  Enjoy your children, love them and hold them like there is no tomorrow...because unfortunately there are no guarantees in life!!!

 

~April

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