background theme

Monday, November 26, 2012

Thanks & Giving

Team Avery at the Kansas City Give Thanks Walk

We hope that everyone had an absolutely wonderful Thanksgiving weekend! Our last 2 weekends have been spent with some of our greatest friends and family.  It was terrific to catch up with our friends and of course see Nana, GJ and Grandpa Randall, as well as Avery's cousins!    The turn out at the Kansas City St Jude Walk was good and can only improve each year as news of the event grows.  We were so proud to be a part of it and to see the 5 other families from the KC Area that are also patients/were patients at St Jude.  Team Avery was well represented and we are so appreciative of all the people who came out to show their support for Avery.  Our journey is by no means over, and for the next umpteen years we will continue to make trips Memphis for Avery's treatment and medical issues.  We pray daily that the radiation has given us back the gift of time and a future, all the while knowing it has also given us a lot of obstacles and permanent issues that will affect our lives forever.  Things we will gladly take if it means sharing the next 50+ years with Avery.

It's hard to believe that we are coming up on the 3 year anniversary of her diagnosis.  It seems like forever ago and at the same time like just yesterday.  Next week we start taking Emmett to Avery's babysitter from when she was a baby.  I'm excited  because I have this false sense of security that Jeannie knows all and can identify problems before I can since she is the one that urged us to take Avery to the Dr to start with 3 years ago.  It also takes a load off our minds in terms of not having to worry about taking him to a stranger.  Now if I can just master the art of getting 2 kids that can't walk on their own out the door before 7 am...I'll be awesome.

It's terribly sad for me to say it...but I am really excited my baby girl is going to have hair this Christmas...she's still missing her two front teeth  - but man, hair in the middle of winter is AWESOME. As always, this time of year sure flies by...soon enough it will be January 21st and Avery will be 4 years old.  Crazy.  A reminder though, to those who never stop and take it all grateful for today, you just never know what tomorrow could bring.  Cliche?  Yes.  True?  Hell Yes.


Thursday, November 15, 2012

St Jude Give Thanks Walk

St Jude Walk: Team Avery

Only one more day left to sign up or donate to the St Jude Give Thanks Walk.  We are very excited to report that Team Avery has contributed over $3000 to the kids of St Jude.  Kansas City is doing a fabulous job in raising funds and is close to hitting their goal of $50,000.

Saturday will be chilly - there's no doubt about that. If you are able to come, please dress warm!  We plan to arrive between 8:30 and 8:45 am and the walk starts at 9:30 am.  We will be wearing black and as much skull and crossbones gear that we can find, and we'll have a Team Avery sign with us.  If you can't find us, give my phone a call or text and I will tell you where we are.  Since this is our first year, I can't give a location yet on where we will meet.

We sure appreciate the support and are very excited for Avery to see all those people again walking for her and her friends at St Jude.  She's over a year older than the last time we walked for her -- I am hoping she will understand things a little more and feel all that love and support that Jeremy and I feel at an event like this.  We can't do what we do without the prayers, love and support of all of you....and of course without the amazing direction and care from St Jude.  1.6 million dollars is what it takes to run St Jude for a day...While we didn't quite hit that, I am pretty darn proud of what we did!


Saturday, November 10, 2012

November MRI

Avery's MRI final results came back stable.  Tumors are still present but they are stable.  The LP was clear of cancer cells and her spine is clear.  Thank you all for the continued's to 3 more months on normal.  Or our new normal...


Monday, November 5, 2012

Heaven earned 2 new angels this week...

Our hearts are heavy today as we learned that 2 more little girls earned their angel wings within the last 24 hours.  We posted about sweet Alivia a few weeks ago and sadly she flew home to heaven yesterday.  It's heartbreaking and devastating and oh so not fair.  As we sat in clinic today, I watched a hospice nurse sit with a mom and her son talking before his pain meds finally were ready and she could change them out.  It was all I could do to not lose it right there...

It makes me angry to see all these families here...knowing they are starting this awful journey...and that many of them will end up saying goodbye for now.  Knowing our journey has been rough and long and that it is no where close to being over...easy...normal.  Tomorrow is our MRI and LP.  To say we are scared is an understatement.  The last 2 Octobers have brought us horrible news...and while we are now in November, we know the chances are there that we avoided October's routine crappy news only to push it into November.   This is our reality.  Every day.  Every hour.  Every minute.   She looks good on the outside.  She's learning and thriving and driving us nuts...but internally we know things  could look very different.

So tonight we pray hard ...very hard.  Cause the Christiansen's could use a little break...and Avery is amazing.  Enough said.