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.

April 23, 2012

4/21-4/22/12 - Weekend time with Nonna

Please pass along and promote through Facebook, Twitter, and to anyone who would be interested in Haylee's YouCaring fundraiser site!  Thanks again!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Petting the Greyhound Dogs


Upclose and personal with a Greyhound
Saturday, April 21

Haylee slept well Friday night.  At midnight the night nurse, Regina, came in to draw labs but Haylee was sleeping on her belly and Regina had to wake her up to get her to turn over.  Haylee hates to be woke up whenever it's not on her terms (just like her mama!) and needless to say she was a mad, mad, mad!  Regina kept telling her to just turn over.  Haylee was on the edge of the bed, then slid off to stand with her arms crossed.  It scared Regina because she didn't know what Haylee was doing!  When she woke up Saturday morning, the side rails were up on the bed and Dave the Duck was in the chair.  Haylee looked around wondering...'how did Dave get in the chair and why are the rails up?!'  Haylee and Nonna found out Saturday night when Regina came back that she was afraid Haylee was going to fall out of the bed and that Dave found his way to the floor and that's why the rails were up and Dave was in the chair.
Haylee and Nonna went to visit the retired greyhound dogs that came to visit in the lobby.  There were 4 - Lola, Rex, June, and Thunder.  When they were racing, their top speeds was around 45 mph!  She enjoys when animals come to visit.  She said she saw Sally, one of the therapy dogs.  We don't get to see her too often. 
Colleen came in and checked Haylee out and brought counts.  She said to let me know that she had 1 monocyte!!  I know that seems like nothing, but eventually that 1 will turn into 5, then 10 and so on. 
Nonna went to McDonald's for dinner on Saturday - a treat for Haylee since I won't do that!!  She liked the change from cafeteria food.  She also pulled a tooth out on Friday night and was treated to a stuffed animal from the gift shop by Nonna since she doesn't believe in the tooth fairy anymore (even though we still give her money for her teeth). 

Sunday, April 22

Haylee sent me a text from Nonna's phone letting me know her counts - 4 monocytes today!!!  And her platelets went up 15k on their own!  She had 92% lymphocytes - 8 lower than Friday.  Looking good, looking good!!
She was nauseous this mornig and said she had a weird taste in her mouth and ended up throwing up while Nonna stepped out to go to the cafeteria.  She never threw up again after that and ended up eating a little breakfast.  Dr. Castentine peeked in to check on Haylee and said her counts looked good and might even be able to go home this week!  I won't get my hopes up, just in case it doesn't happen.  You know, hope for the best and expect the worst!  Her rash looks tons better, too!  It's still there but not as red.  It's actually kind of taking on a purple color, just down her legs and trunk.  Her arms and face look GREAT! 
I came back this afternoon and noticed that her hair (well, the stuble since it was shaved Friday) has thinned out and she has a few very small spots where her head it bald.  I brought her some hats to wear. 
Haylee's been complaining about a few mouth sores on the tip of her tongue and inside of her bottom lip since about Friday.  They brought her in 2 different washes for her mouth that she could use but she refuses cause they taste bad to her.  Nonna and I both told her that those washes help but that if she chooses not to use them, it was up to her and not to complain if the sores hurt.  She didn't eat lunch today because of the sores but did eat dinner tonight.  She still hasn't used the washes since I've been back.  She complained of being dizzy and of a headache right before dinner - I figured getting some food in her might help the problem and it did some.  She took some tylenol as well to help.
Haylee went to the playroom with a volunteer for a little while and played.  She came back, had a bath, and settled in for bed. 

Saturday and Sunday's counts:     
                                                                   
WBC - 1660  ;  2040
HGB - 9.8  ;  10
Platelets - 45k  ; 60k                                                                               
Monocytes - 1 (yay!) ; 4 (YAY!)
Lymphs - 98 (watch for this number to come down)  ;  92


COUNTS ARE ON THE RISE!!  WHOO HOO!! 


1 comment:

  1. that is GREAT NEWS!!!! counts are going UP! and you and haylee are going HOME for a few days... YIPPEE!!!!!!!!!! that makes me HAPPY HAPPY!! :) (can you tell!) haha... one more round down... two to go... :)

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