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.

December 12, 2011

12/12/11 -

Pumpernickel the Rabbit

Cousteau the Hedgehog

Opus the Opossum
Haylee slept really good last night after about 1:30am.  She was up early, though not really sure why.  She told me when she woke up she forgot about her head being shaved and it freaked her out for a minute.
Ha ha!  A doctor came in really early just to check on her and told Haylee she liked her new haircut.  Haylee told the doctor she liked it because it was like her Daddy's...sweet :)
They came in and gave her her ATRA pill as well as her blood pressure pill.  She wasn't sitting up quite all the way and ended up choking a little and it caused her to start throwing up.  She didn't throw up a lot and was able to keep the pills down. 
She was given Benadryl at 9:30ish and it knocks her on her rear!!  I actually hate the fact that she has to have it because she gets grumpy and doesn't have a restful sleep during that time in the mornings (and it's BORING when she's sleeping).  If it weren't for the Benadryl, I could get her to go to school first thing in the morning and she REALLY needs to go today. 
The renal doctor came in to check on Haylee this morning.  Her blood pressure first thing this morning was 135/105 so they gave her IV blood pressure meds to bring it down quickly.  According to him, the IV BP meds are so insignificant (because it's only 4mLs - 10mLs is what most get) that she doesn't even need it really.  As long as she's getting the pill, it can be managed that way as an outpatient since she will be in clinic  daily.  Her blood pressure isn't extremely high, but a little higher that what it should normally be.  He is going to up the dose a little or change it to something else completely to get her blood pressure under control.  He feels that it's just temporary since she's never had high blood pressure before.  Once her blood pressure is back to normal, she will stop the BP meds.
Adam came for lunch today and with his help, we were able to rouse Haylee out of her Benadryl slumber.  We walked him downstairs and then went to school for an hour.  We were in and out of the room all afternoon doing laundry, having Tea at 2, and going to the playroom.  At 4pm, we went downstairs because the Atlanta Zoo brought some furry animals to show to the kids.  Haylee really enjoyed herself.  We were called out of the show because a home health nurse was there to teach me how to flush and hep lock her lines (flush with saline and heparin lock to keep her lines open).  She also brought me my first month's supplies for at home care since we will be going home this week!! 
Haylee's second grade teacher, Ms. Matthews, and her reading teacher from last year, Mrs. Smith, came for a visit as well.  The visit had to be cut very short because the home health nurse was waiting.  That was a bummer for Haylee - she adores Ms. Matthews.  
She played catch up on some schoolwork and ate some dinner - mac and cheese and orange sherbet.  It's been a very uneventful night but we like it that way. 

The Hem/Oc doctors came in today and said that everything including her counts are looking good and she should be able to go home this week!  No set day just yet; I'll double check that tomorrow!

WBC - 2770
Platelets - 65,000
HGB - 10.8
SEB - 7
Monocytes - 2

3 comments:

  1. that is GREAT news Ryane!!! sounds like you guys had a really busy day. i am SOOOOO glad to hear she may come home this week! AWESOME!!!! thought about you both all day... sending good thoughts and prayers your way.. :)

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  2. Yay!! Having the home health nurse come today makes it more real that Haylee will be home this week! That is so great!!! Being home, sleeping in her own bed(with that humongous picture of Justin staring down at her), just in time for Christmas will be the best gift she gets! You are an amazing kid, Haylee!! Bunches of hugs and kisses from Uncle Shane, Aunt Shannon, and Ryan!!!

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  3. Tell it's ok about the whole grumpy thing when it comes to the Benadryl... I am the same way!! So excited that she get's to come home soon :) I told her when she gets home I will bring Jordan over for her to meet. Haylee you are such a strong little girl! Keep it up Miss Thang! Love you Bunches ~ Stephy ~

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