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Thursday, January 26, 2012


After talking with our team today at Children's Mercy and St Jude we have decided to move forward with Radiation now.  We have had great - better than expected results with this particular clinical trial and we'd hate to lose that by pushing forward with another 2 rounds of chemo only to find the disease has found its way around the chemo.  Taking that risk into consideration we have decided now is the time.  Hit it while its down - so to say.  

This means that early Sunday morning we will once again pack our bags for that 9 hour drive to our home away from home.  Her appts start on Sunday afternoon and are so far scheduled through Wednesday but our guess is that many more will be added for the rest of the week and we will find ourselves running like normal.  Although it hasn't been confirmed, we are assuming we will start radiation on Monday the 6th.  The plan is for 4 weeks of all over spinal/cranial radiation, followed by 2 weeks of boost radiation to the specific tumors and the original tumor bed.  Once we had our appts with the radiation team in Memphis, we will update more specifically. 

Once again we find ourselves split up from each other...but something we will gladly do if it gives us the results we are so desperate for.  Avery is strong.  She is a fighter.  And we will give it our all to get rid of this damn mother effer of a disease. 



  1. Avery Anne was prayed for by our whole church this morning . Her Great Grandpa Johnson and I shed tears as we heard her name. So many people are praying for your family. I know you feel God's grace because that is where the strength to fight comes from. Love, Auntie Lori and Grandpa Johnson

  2. We also pray every day for Avery and your whole family Jen. Grandpa is right... we know you feel God's grace as he walks with your during this hard journey. We love all of you!
    Love, Aunt Patty and Uncle Scott

  3. I pray Avery is the tough little girl to knock out this horrible disease. She is a true inspiration and such a cutie!