My Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about Kaylee.

Kaylee was diagnosed with Stage 4 Neuroblastoma on June 6, 2008 at the age of 5.

Keep Kaylee in your thoughts & prayers. We all know she is a strong little girl who is going to fight her way through this battle and come out a winner.

Thank you all for your love & support.

Trish & Mike

Journal

Tuesday, June 30, 2009 9:27 PM, EDT


I finally got around to updating some photos on the site.  I included the pictures of the mural from Splashes of Hope. 

Kaylee had day 4 of radiation today.  They decided to do 5 days of full brain radiation and then 5 days of targeted radiation.  I wish I could tell you that her eyesight is back, but it's not, not yet anyway.  We went swimming today and when I put on her goggles she asked me to wipe the water drops off of them and I asked her if she saw the water and she said "yes".  Then I asked her if she could see me but she said only a little.  Things are still very blurry and she can't make out any color.  I hope tomorrow will show some more improvement.  She is still sleeping alot and the steroids have taken full effect.  She is pretty much only eating mac-n-cheese and ice cream with crumbled up oreos, and she drinks ALOT of strawberry milk.  All of this is great, but not in the middle of the night.  2 nights ago she woke up 5 times during the night to eat something..not fun but we did it.  Last night wasn't as bad, she only woke up twice to eat.  She wanted to go swimming today and actually enjoyed herself for the first time in a couple of weeks.  She was able to stay awake for about an hour and floated around the pool.  We even saw a smile or two, thanks to Olivia.  She has been our babysitter since the girls were little and is one of Kaylee's favorite people.  Kaylee is at her best when Olivia is with her. 
So that's about it for now.  We are just taking things one day at a time, and when Kaylee says she wants to do something we pretty much jump and do it.  We don't get very many opportunities like that and we're not going to let any of them pass us by.
Thank you for keeping Kaylee and our family in your prayers.  We find such comfort in your messages left for us and knowing that Kaylee has so many people who love her.  I hope you all know how much that means to us.


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Please feel free to visit Kaylee's guestbook and leave her a message. She loves to hear from her friends and family.

Kaylee at the fashion show link:

www.youtube.com/watch?v=RSzAf8DSBhg

Kaylee's angels link:

http://kaylees-angels.wikispaces.com/kaylee

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E-MAIL AUTHOR

mickntrish@verizon.net

HOSPITAL INFORMATION

Memorial Sloan Kettering Cancer Center and Stony Brook University Medical Center
NY