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Monday, November 28, 2011

hair today...gone tomorrow...

Two weeks ago I looked like this...


Last weekend I looked like this...
Thursday I looked like this...



Today I look like this...



This is the 3rd time we've watched that hair fall out and it never gets any easier...It makes me sad each time.  I can handle the puking and the runs, the not walking, the delayed talking, the hearing aides and missing teeth....but what I struggle with more than anything is that gorgeous hair coming out in my hands...all over her clothes, all over my shirt.  Silly I know -- it's just hair and thankfully she looks completely beautiful bald but it still gets me.

We had a great weekend with Nana, GJ and the puppies, as well as Grandma.  We even hijacked one of the puppies to stay with us.  Bear has been relegated to Avery Hug duty -- something the other dogs run from.  We've decided he's either too sweet or too dumb to run, but either way it makes Avery light up that he lets her hug him.  She is talking in 3-4 word sentences now and seems to be getting better at communicating every day.  We found out that she did indeed have some further issues over the weekend when they called to tell us she had a UTI.  Hoping this explains the continued crankiness and lethargy.  Another round of antibiotics, followed by some runny poo and we should be back to good.  

Thursday's MRI is at 11 am, however we don't expect results until Monday.  CMH tends to wait a few days prior to giving results because apparently radiologists have never experienced the fear and anxiety that comes with waiting for results like these...I'm sorry -- outloud voice there....CMH prefers to looks at all scans extremely well before releasing its report is what I meant to say.  We have an appointment Monday with the team at CMH to get results.  St Jude will also be getting a copy to review over the weekend and next week will have us meeting with them via conference call to make decisions about our next step.  As soon as we have news to share we will.  The options at this point are the chemo will have stopped the growth of the tumors and kept them stable, it could have done nothing and we will see larger and/or new tumors, or it could have shrunk them somewhat.  The first option is the best and most likely -- the last being very rare and unexpected.  However, as we've already seen with our journey - miracles DO HAPPEN and we DO BELIEVE in them....we've got a very special angel up in Heaven helping Him to see what an amazing girl we have down here that someday is going to do something very special in this world.  And with a team like you all to back that up....well there's just no telling what might happen.  

In the mean time -- Make Every Moment Count.

Jenn

5 comments:

  1. She is lovely! Praying for you all! Hugs!

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  2. ShaKeela And KayteeNovember 29, 2011 at 2:46 PM

    Avery is so beautiful. Everytime I look at a picture of her it puts a big smile on my face. I keep you all in my prayers. Miracles Happen and I am hoping and praying for great results Monday :-). I have followed your blog from your very first blog entry. Avery never fails to amaze me that little girl is so incredibly amazing. She changed my life in many ways it's the little things that matter. Life is too short. I complain about little things when it's nothing compared to what Avery and her family is going through. If you love and care about someone let them know. You never know when it's your time or theirs. She showed me not to take people, things or anything in my life for granted. Avery is changing lifes and will continue to do so after she gets through this mess.

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  3. Jenn ~ Once again I am amazed by your strength and ability to express your feelings with such eloquence.
    Whatever choice you and Jeremy make will be the right one.
    At some point you need to think about putting this journal into book form. Your frustations, elations, sorry, fear and hopes are all things that other parents/people must feel when being faced with this disease.
    Please consider it, this journal might just give others the strengh to indure.

    Lucy Hough

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  4. Praying for Avery, Jeremy, you, the medical team at CMH and everyone involved in today's MRI scan & test results. As I prayed last night and this morning I told God... "I don't know why you haven't healed Avery of this cancer but I understand there are things in this life and world we are not meant to understand. But the most important thing is that I do know HE CAN AND DOES heal and perform miracles...and I am standing on that promise today and praying for a miracle for precious Avery!"

    Beth Mayhew ~ Meri & Madi's great aunt

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  5. Praying for Avery and God's gentle hand to ease your pain. Avery has been blessed with beautiful and strong parents. Love you guys.

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