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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.