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Wednesday, December 25, 2013

December Update

Well as many of you have already figured out -- I failed to update after our trip 3 weeks ago.  It amazes me how quickly Halloween turns into Thanksgiving turns into Christmas...yet here we are again.  Avery's scans went well. They were stable again, but this time we were met with much more optimism from our Dr than we had seen in the past few visits.  They found out that the spot that caused us some concern in August, was actually able to be seen on the scan from the spring.  This means the spot has been there - and not gown for almost a year.  That tends to lead us  more in the direction of radiation schmutz as our Neuro Oncologist called it.  What does that mean?  Well more the watch and see approach, BUT - he was comfortable pushing us to the 4 month visit mark.  That's HUGE for a cancer family. To see your visits stretch out over longer amounts of time is a great sign!  Super anxiety ridden 4 months of time for mom and dad, but at least they are comfortable waiting that extra 4 weeks.  This was probably the best visit we have had since our first 8 months of treatment and proton radiation. 

The St Jude Walk was ABSOLUTELY FREEZING.  But for those brave souls that came out to walk with us - it really means the world.  Avery is not currently in treatment, but each day is a battle for her. The effects she has to deal with as a result of this evil monster and its awful treatments will always be present in our lives.  Every day we see what it has affected and we find ways to work around it.  Her battle is not done - nor will it ever be.  This is something that she will soldier on with for the rest of her life, may that be another 75 years.  St Jude has given us the weapons and tools to battle and  move forward.  For that we are forever grateful.  I think KC raised just shy of 100K in its 2nd year.  I suspect they would have pushed above that had Mother Nature not decided to freeze us out.  I think the goal is 10 laps -- we made it around twice.  I found both my kids in the women's bathroom at various points so not sure they actually made it around the ball park.  Gotta do what you gotta do right?

When we go back at the end of March, we will start testing for Growth Hormone Defficiency.  Avery is not growing like we need her to and we are going to run some tests to see if her GH is doing what it needs to do. If not, we will be looking at putting her on a daily shot of GH to get her moving.   Yes I said DAILY SHOT.  My mornings will get that much more fun and I can't wait.  Right now her body is the size of an average 2 and 1/2 year old.  Something that is becoming more obvious as her friends continue to grow.  We did however get a new walker.  Not sure I am ready to give up the bling bling gold one yet, but the new one is really slick.  It's green and she seems to be pretty good at manuevering it.  If the test show she is in need of the GH then Jeremy and I need to make some decisions.  Thank you to you all for the continued thoughts, prayers and support this year.  Things have finally settled into a normal for us and we are navigating as best we can with these 2 small kids and all of their craziness!