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Saturday, January 17, 2015

Heartbroken

Today we are heartbroken.  We spent 6 long months with 3 other families at St Jude during those first months after Avery's diagnosis.  During our stay we became close with 3 families in particular, one being the Mitchells.  Belle was diagnosed with a rare brain tumor and like Avery was following the SJCY07 protocol at St Jude.  Belle experienced relapses like Avery and started down a similar path just months before us to include Radiation and further Chemo.  She continued to fight even after we were finally able to step back and breathe for a moment. 

This little girl captured the heart of so many with her giggles and energy.  Everyone at St Jude knows Belle.  Even at her hardest moments she always had a witty comment or sneaky smile for you.  Today she earned her very well fought for Angel Wings.  We are completely heartbroken. 

This hits very close to home for us and we pray for peace and solace for her parents and siblings as they endure the weeks ahead.  Pulling that brilliant character away from them is just devastating and I can't imagine the horrible emptiness they must feel after a 5 year battle with this ugly beast.

We are coming up on Avery's 6th birthday in less than a week.  Something we were told would most likely never see.  Frozen theme again this year.  We invited her friends from her class and we will see how that goes.  Then the day after her party we will leave for our next round of scans and check ups.  We could use some prayers for stable scans with regards to the bleed in her brain stem.  The MRI is on February 2nd and results will be given on the 3rd.  We will post as soon as we can.

Jenn



Sunday, January 4, 2015

5 Years!

     5 years ago, right after Christmas we were given some unexpected, life changing news.  Our 11 month old daughter had a brain tumor and the prognosis was not good.  We were given a 25% chance of her surviving 5 years .  Since that day,  Avery has had over 10 surgery's, has done 4 different Chemo regimens, 72 days of radiation, and has traveled to 4 different states to do this.  It's hard to believe that it has been 5 years since we started this journey.  It's even harder to think that another family will inevitably start the same path tomorrow.  We want to thank everyone for all the support you have given us over the past five years.  There is no way we could have done it with out you.  We thank God everyday that we still get to see Avery's smile each morning. She has touched so many lives and continues to amaze us everyday.  It's been 33 months since Avery's last treatment, and while each day she deals with deficits from her treatment, there isn't a day that goes by that we regret our decisions to fight.  She is a warrior, a miracle, but above all else a survivor. 

Jeremy & Jenn