My daughter, Haylee Kate, was diagnosed with APML Leukemia, which is a rare form, on November 21, 2011 at 8 years old. I thought this would be a good way for me to get my thoughts and feelings out and to let others know about her ups and downs throughout her treatment.

June 14, 2012

6/14/12 - Easily frustrated (at each other and blood counts) but all in all, we had a good day :)

Haylee and I slept pretty good and she even woke up before me!  That's a first out of our entire time here!  I would close my eyes and Haylee would ask my why I was going back to sleep.  When she's awake, she wants me awake too but when I'm awake, I'm supposed to let her sleep!  Ah, kids.  I see where my parents were coming from now (hehe!). 
I think a full week together...alll day and all night have really started to try our patience with each other.  Haylee was doing things that was getting under my skin (more so today, I think) and I would say something to her about it and she would get snippy, which then made me mad and I would get snippy back and so on....it's a vicious cycle.  Finally, I would breathe in and out, just quit speaking for a little bit, and gather up my emergency supply of patience.  Haylee's not sure what to do when I quit speaking so she waits a little bit, apologizes, and then we're all better.  By Thursdays, I'm ready for the weekend but by Saturday afternoon I miss her.  We're dealing with this together.  The walls are closing in on both of us, there's only so much we can do and only so many places we can go.  Sometimes, Haylee just doesn't make it easy, either.  She gets crazy and silly and there's only so much of that you can take, she gets bored, she gets sassy...it all wears on you when you're trying to keep your patience. 
We made a Butterfinger Cake today for something different to do.  Since Haylee is on a fat restricted diet, we made it as low fat as possible using Diet Coke with the cake mix instead of the box directions and fat free cool whip.  Haylee and I had a small piece, we cut a piece for Lindsay (her and I have been talking about it for over a week now), and gave the rest to the nurses.  Our nurse, Krystal, snagged her a piece and said it was going fast!  She said it was so yummy!!
We went down for our daily library visit.  Haylee really enjoys the computer game time she gets and I enjoy my treadmill time.  I also catch up on my magazine reading :)  The were having 'Legos in the Library' this week, but we got down there when it was almost over and there wasn't hardly anything left.  Haylee wasn't heartbroken over it. 
We got back upstairs (about 4pm) and Krystal told us that Colleen and Kelly (the PA's) had been looking everywhere for us!  Kelly said she almost sent a hospital wide announcement for us to return to our room...oops!!  They knew we were out and about (they know us pretty well) but Haylee was also their last patient of the day.  No changes still and counts still aren't dropping.  I went back and looked at last admission to see when counts dropped and it was about Day 13 (which will be Sunday...today is Day 10).  I hoped to see counts drop sooner but they didn't.  Hopefully in the next few days they'll drop.  I guess it's possible they just won't drop...and I'm OK with that too, if it means us getting out of here sooner and Haylee being able to go to camp!
BINGO was tonight - she won fingernail polish, glow in the dark solar system for her ceiling at home, and the board game 'Life'.  BINGO is always fun!  The patients and their siblings are the only ones supposed to participate but some parents take advantage of the 'everyone wins' rule and use it to rack up on free stuff.  It's sad...they're taking away from another child next time.
CURE fed us Chik-Fil-A tonight...yum!  Our night was as routine as all other nights - dinner, bath, Skype with Adam and Mason, a little TV, and bed. 

WBC - 2140
HGB - 9.0 (unless this goes up on its own or stays above 8, she will have to have a transfusion)
Platelets - 43k (she'll probably have to have a transfusion by this weekend)
ANC - 830
SEGs - 39

The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!

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