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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



Saturday, December 20, 2014

Disney 2014 Christmas

3 years ago in October we were told Avery had relaspsed again, this time with visible tumors and leptomenigial spread.  Devestated once again we had to make hard decisions to spend quality time with her or to put the gloves back on and keep fighting.  We have never regretted choosing option 2 even though it has come at a high cost for Avery.  Her deficits and delays will plague her daily for the rest of her life.   But yet here she is  - 3 years later - stronger than ever.

When Avery relapsed we asked to have Avery's Make A Wish moved up as we prepared for the worst.  We headed off to Disney World for Halloween, just weeks after hearing the crappy news.   We  even had a huge party of friends that were willing to go with us.  It was amzing.   When we returned we battled hard for 8 more months and finally seemed to kick this beast down.  It has been 2.5 years since her last radiation treatment.  We have had 2.5 years of what they refer to as "stable" scans.  There is a lot guessing and crossing of fingers that spots are nothing and can be chalked up to "treatment schmutzt."  This last visit to St Jude however, gave us a little different report.  This time we were told that they found a hemoragic bleed in her brainstem.  This is common for kids that have had as much radiation as she has.  Unfortunately, her bleed is in her brain stem - a place that is not forgiving for extra fluid.  As a result, we have been watching closely for changes neurologically.  Stroke, weakness, paralysis, siezures and of course death.

Hearing this kicked our "someday"  into gear and we decided it was time to take her back to Disney World - a place she's been begging to go since we were last there.  To say she has fun is an understatement.  Her and Emmett squealed, oooed and ahhed all week long.  She giggled and ran around with her brothers and the Scahub boys, while Nana and GJ chased them around the many parks of Disney.  No one was lost and the meltdowns were few and the Christiansen's have had a very  Merry Christmas already.  Thank you to Nana, GJ and Jeremy for pushing this to happen now -- my preference to plan would have not allowed for an impromptu trip like this - with memories that will last forever.  And just a small reminder to all - don't put off till tomorrow what you can do today.  Tomorrow is promised to no one.  Cancer Fighter or not.



Jenn