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Tuesday, June 4, 2013


Totally gone would have been awesome...but no new areas to watch was a welcome relief today.  Avery's platelets went down to 64 by this am so we will recheck in the morning and possibly top her off before leaving tomorrow afternoon.  We will recheck again on Friday at home and most likely again next week if need be.  They are thinking virus for now but the chance of a secondary cancer is always out there...leukemia wouldn't be that far of a stretch at this point in the game.  Yeah I just said that.  Welcome to our world.  Crossing our fingers that her body is just rebuilding from a virus and that we will see some progress in the next few days.  

We are fairly content with stable, although I hate reading the MRI reports that repeat the words "possible leptomenigeal disease" in more than one area.  But we are crossing fingers, sending prayers and feigning lack of interest for the next 3 months until something changes.

My mommy radar was on high alert these last few weeks because Avery has been an absolute defiant little turd.  In my head a kid can not possibly be that big of a brat and not have intercranial pressure...turns out you can.  So on the plus side-no new tumors.  On the negative side- I may need that British nanny to come spend a week with us.  Who new 4 year olds could be so strong willed??  

Thank you for all your amazing prayers...



  1. She is so strong willed because of all she has gone through and that uscwhatbhas gotten her this far. I just know that in my gut! Keep your Mommy and Daddy on their toes, Avery!

  2. Avery has been blessed with amazing parents. Your lobe and strength has been a huge part of what keeps her spirit alive and her ability to still be a child.

  3. Hi Jenn,

    Praise the Lord!!! I pray Avery's platelets come up and there is NO hint of any other disease!!!

    ♥♥ Love ya!! ♥♥
    C.O.L.E.'s Foundation
    (Caring Openly, Loving Eternally)

  4. She sounds like a normal 4 year old to me. We always said out boys skipped the "terrible twos" and waited for the ferocious fours. Hang in there, you are great parents.