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 18, 2012

6/15-6/17/12 - Weekend #2 - A change in counts and a naughty clown visit!

Happy Father's Day to all the fathers out there (especially to my Daddy) and to Adam, who has been there going through everything with us and who we couldn't be without. 

Friday

Nothing happening today :(  Slow, boring days like this really make it hard at the hospital.  We found out some sad news...Lindsay, our most favorite Child Life Specialist, is moving back to Texas.  Her last day is next Friday.  She has been training a new CLS, Layne, who will be who Haylee sees in clinic when she starts maintenance.  I imagine we will be seeing a lot of Lindsay next week since she said she has to soak up as much time with Haylee as possible in a week (I think Lindsay is just as fond of Haylee as Haylee is of her). 
We headed downstairs to the library for daily personal time.  Lindsay and Layne came to find Haylee to take her on a photo scavenger hunt throughout the hospital.  It gave Haylee the opportunity to interact with Layne and spend some time with Lindsay.  Haylee went with Lindsay and Layne to meet their boss (whose name is also Lindsay).  Boss Lindsay liked Haylee's fashion statement with the Lillybands wrapped around her ankles like anklets so Haylee is going to participate in the HLN story about the people who make Lillybands next Thursday (yes, she's going to be on TV again). 
Nonna showed up around 7:30pm to stay with Haylee for the weekend.  I'm excited to get some much needed time in with my men (but I'll miss Haylee all in the same). 

WBC - 1990
HGB - 9.2
Platelets - 29k
ANC - 380
SEGs - 19

YAY!!  COUNTS ARE DROPPING!!

Saturday

Haylee and Nonna went downstairs for an early game of BINGO.  Haylee was able to get Tinkerbell/Fairy dolls with every win and Nonna played to win things for Mason. 
On their way down, Dr. Pucci was making his rounds on the floor.  Him and Haylee get excited to see each other.  He asked Haylee if she had ever been TP'ed.....Nonna thought there was no way he would do something like that....well......

Surprise....!

The clowns have struck and blamed the mess on Cowie!

A web of TP!

Payback time....
Haylee had her room TP'ed by the clowns and they tried to blame it on Cowie!  Naughty clowns!  Leah , the charge nurse, said they needed some payback and got Haylee a giant syringe (the ones they use to administer IV antibiotics) to fill up with water so she could squirt them when they came back to see her reaction.  Too funny!
Later on, Haylee and Nonna were racing down the stairs and Haylee fell down a few of the stairs.  She wasn't hurt any worse than a bruise on her knee but since she was low on platelets, I'm sure it looked worse than it really was.  She didn't even cry!

WBC - 2190
HGB - 9.2
Platelets - 19k
ANC - 150
SEGs - 7


Sunday

Haylee wanted to be lazy today so she stayed in bed and played her DS for most of the day.  The doctors came in and checked on her knee - just a bump and a bruise.  Her platelet count dropped to 10k so they gave her a good sized bag of platelets to replenish.  She was given Benadryl for pre-med but didn't fall asleep.  She said she got tired but stayed awake. 
For Father's Day, Haylee made Adam a coffee cup and a duct tape wallet (which was actually really neat).  She wanted him to empty his current wallet and use the one she made but its huge and has animal print on it (hehe!).  Danielle came in and showed Haylee, Nonna, and Mason how to make duct tape flowers to go on pens.  A neat idea!  Danielle also caught Haylee up on her Beads of Courage and she now has 4 strands to show off :)
Haylee and Mason played ball in the garden with Nonna and threw pennies in the wishing wells in the garden.  They left around 5pm and Haylee and I headed upstairs to chill for the rest of the night.  She went into the playroom with a volunteer for a little bit then came back for a bath and bed. 

WBC - 2290
HGB - 9
Platelets - 10k
ANC - 210 (could counts be on the rise??  tomorrow should tell for sure.)
SEGs - 9
Monocytes - 2 (there weren't any Friday or Saturday)

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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