Days 4 & 5

*I just need to take a moment to say thank you to everyone who has reached out to lend strength, support and prayers as well as offers to connect us to those who have walked this path before.  We are totally overwhelmed (in a good way!) and just trying to sort through all the information given to us by the doctors/ nurses as well as the foundations, families and support systems.  It is so beyond comforting to know we are not alone in this fight and have so many resources and people who are able to help us know what to expect.  As I said, I don't know it yet, but I know that God chose Addie specifically for this fight and I trust that we will all one day know exactly why, and be grateful for all of this - even the bad and scary stuff.

8/21 - Today has been Addie's best one yet!  She did have a dose of Chemo through her IV and handled it flawlessly and showed no side effects.  She seemed "herself" all day today and it was so nice to see. She did complain that her throat was hurting periodically throughout the day and the doctor said it could be either a side effect of the steroids she is on (they can cause mouth sores) or possibly a small infection given the fact that she essentially has no immune system at the moment. They gave her Tylenol and that seemed to help.  She didn't want to be in bed much either with the exception of when she took a 2 hour nap in the late afternoon.  It was so nice to see her resting without any pain.  At night she became a ravenous little beast!  She requested chicken fingers for dinner and finished all of them (if you know Addie, you know its rare for her to ever finish her meal, lol).  She then requested cucumbers with salt, more chicken fingers and finished off her cravings with a bagel!  It was a relief to see her with such an appetite since that hasn't been the case since we got here.



8/22 - Today was a hard day on Addie - we aren't sure if it is because of the Chemo yesterday or the fact that her WBC (white blood cells) are almost at 0 giving her body the inability to fight infection. She basically slept the whole day and barely ate or drank anything - quite the opposite from the night before. She was up for a short time and painted a picture that we hung on her wall.  In the evening she started complaining that her head hurt so we checked her temperature and it was at 100.3 - the highest its been since we got to the hospital.  I of course panicked but the nurses assured me that fevers are to be expected and they have protocols in place on how to handle them.  The good news is that my strong little girl was able to fight it off on her own without medication and within 2 hours her temperature went back down to 98.7.  At around 9:00pm Dan ran out to get Starbucks and Addie requested a S'mores frappuccino (happy to see she still loves these!).  He came back and she told us that they made it wrong. LOL.  She explained how it was supposed to have graham crackers on the top and chocolate on the bottom (this one looked like it was all chocolate). So then she said, "I think I'll try a Strawberry one instead".  I told her they were probably closed now, but Dan of course flew back out and drove back to Starbucks to get our girl what she wanted.  I didn't think she would end up drinking it - she was asking for things all day, would take a bite and not want it anymore), but to my surprise she drank about half and I had a little sigh of relief.  Not the healthiest option, but it was great to see her actually eat something today.  Hoping for a better day tomorrow.

My Sleeping Beauty

If there is one thing we have come to learn, between the steroids, pain and her emotion of being in the hospital, things can change on a dime for her and her mood.  She could be whining one second and complaining about something hurting her, not even wanting to speak a word- and then burst out something off the wall hysterical!  I miss her sassy little personality and when we see glimmers of it, I hold on so tight to those moments.  I can't wait for her to be "out of the woods" here in the hospital and somewhat back to herself-at least for more than a few moments.

With Love,