Two Weeks

I was about to post that we have been here for exactly 2 weeks, but then it dawned on me we have been here a week and 1 day.  I've said it before but there is not much differentiation in our days and nights.  There is no routine and no normal when you are in the hospital.  Especially when you have a child who is riding a medical roller coaster that never stops.  You can literally look up and it's 9:00pm, and you've been up since 5:00am.  No breaks...no rest.

But there is no where else I would rather be.  Let me rephrase that.  There are a MILLION other places I'd rather be than the hospital.  But life dictates that right by my baby's side is where I need to be and wild horses couldn't drag me away. 

The two pictures above probably don't show the anguish that I was feeling when the pictures were taken.  This was after I had received our news yesterday and we were preparing for our 3rd surgery.  But that was a moment in time and now we have moved on.  We have to stay focused on the prize.  The victory is ours (God's) (Lucy's) to win!

Lucy continues to work hard in physical therapy.  This picture was actually taken 2 days ago, as she was on bed rest today and just felt horrible yesterday.  I know it is very frustrating for her and she does not understand why her body is not working, but her will and determination are to be admired!  If you notice in the picture below she is using her left hand to hang the monkeys on the net.  She is favoring her left side more because the right had more damage from the tumor.  I have faith that she will work through this in time.

I felt as if we had another breakthrough today on the personnel side of things.  I've mentioned Tracy's name before as the lady sent from God to help us during this trial in our lives.  She is so good with kids and wants so desperately for Lucy to trust her.  Lucy does not trust anyone right now except her family.  All she knows is that strangers keep coming in her room and when the leave she usually hurts.  You can see where this would be tough on a 5 year old.  But today I think there was some headway made.  Lucy actually had a conversation with Tracy and told her she loved her.  Lucy even showed Tracy her light-up frog she got on one of our shopping excursions.  Although you can't see Lucy's face, I can promise you I saw a smile.

And then today, although in crazy amount of pain, Lucy asked to go back downstairs to get ice cream.  I think it was just a ploy to go back to the gift store, but I did not care.  Whatever it takes! She ended up with a Nutty Buddy ice cream cone and a HUGE teddy bear that is as soft as silk!  I think the bear is as big as she is.

As I was looking back at some of the pictures since we've been here, I noticed just how much weight they have put on Lucy.  She had lost almost 10 pound after 1 1/2 weeks here and they put her on TPN to get her beefed back up.  We need her at prime fighting weight when we get to St. Jude.  Well, it has worked!  Between TPN, steroids and the appetite stimulant she has filled out rather nicely.  I know it won't last, but I'm glad that we will not be starting out in a deficit. 

I continue to be humbled and honored by the emails, comments, messages and Facebook posts sending me encouragement and well wishes for Lucy.  Some of them I know God has used to minister to me when I needed it most.  You can not begin to imagine some of the stories I have heard.  I know it would be hard for some people to believe, but many people have written in to tell me that they believe beyond a shadow of a doubt God has revealed to them to pray for Lucy.  Some even believe they've received signs that she is going to be ok.  Even complete strangers have moved me to tears as I read their emails telling me they just know Lucy is going to be ok. 

Mrs. Charlie, Lucy's teacher, told me today that while she was praying she asked God why he would use a little child in such a way.  She told me that a voice, just as clear as a person standing her, answered that we don't pay attention as much if he used an adult.  While I get what she is saying I still don't understand why it had to be Lucy.  I probably never will.  I just told Mrs. Charlie that I was glad God was sending her a message.  I've been checking my "in box" and haven't received one yet.  Maybe I'm just not listening, you think?

Psalm 46:10 says "Be still and know that I am God."  I'm going to try my best as we are preparing for the next phase in Lucy's treatment to abide by this verse.  It's totally not my style, but hey!  None of this really is.  It's time to become a new person.  It's time to start listening to God.  I want to be obedient, but I find it so hard.  Things aren't really going our way right now and it makes it a little difficult to get out of our situation long enough to do more than plead for Lucy's life.  To be real honest, there's not a lot of time spent praying for extra things these days.  Lucy is sort of top on the list.  I'm working on it, though.  Trying to make a change occur.