Day + 2

Last night I got my family back! I guess I shouldn't be surprised at all that Kayla was supposed to be released at 8:00pm and didn't actually walk through the doors until 10:30pm! Nothing every goes quite as planned when it comes to discharging a patient. Anthony was delirious while waiting to see his sister. He was SO excited!!!

Killing time in the wagon. It was so beautiful out! Like a warm summer night....

Having Fun playing with the camera in the Chili's Care Center

 Finally, we got to head back to the Target House at 10:20pm

Kayla slept the whole way and never woke up once! She was exhausted.

As you can imagine, we were all pretty tired this morning. We decided to let Kayla skip school at 9am since she was still barely awake by then. Once we got moving, it was a busy day at the hospital. Kayla had her blood checked in A/T, and then her check up in B clinic to go over the results of her blood work up. Her ANC is 3,700 so we still have a couple of days before she is neutropenic (meaning her counts drop to zero).  Kayla wore her mask all day in the hospital and we are all starting to get used to it. Working out the kinks on how to get it to fit her right... we will get it down in no time.

Look at how PRETTY B clinic is! If only EVERY waiting room was this cool... 

Two big tropical fish tanks and a twinkling starry sky! (and they had a craft table set up in the back today)

My LOVES!!!!

This is where Kayla gets her daily G-CSF shots. It's in the Med Room which is basically their "ER". It's open 24-7. Above each chair is a flat screen TV. (Kayla was watching G-Force) The G-CSF shot followed by a line flush takes about an hour.

 

 

 

Today we had a really cool surprise. I hadn't posted it on here because we weren't sure if it was going to happen or not because of Kayla and how she had been feeling lately. Even though we got home so late last night, we decided to go for it! ALSAC called a few days ago and wanted us to be part of St. Jude's new upcoming commercial that will air this summer. We knew it would be so great to be a part of it for so many reasons. You know how passionate I am now about spreading the word about awareness and also as to how amazing it is here at St. Jude.  Even though we were missing seeing sesame street (yes, the real deal!!!) at the Grizzly house, this experience would be worth it.  So off we went to have our first experience behind the cameras. It was truly such a gift to finally feel like we were giving back to such an incredible place which has and continues to do so much for our baby girl, Kayla Rose.

Here are a couple "behind the scene" pictures I was able to take during the shoot.

Getting all the props ready. Kayla was EXHAUSTED, but such a trooper. She is really proud of herself for hanging in there and helping out this amazing hospital in this way.

 These are the masterminds behind SJ commercials... the men who MAKE US CRY! :)

 I can tell you, this is going to be an incredible commercial!

Anthony took this shot of his new friend... thus the blur ;)

Kayla truly was a trooper. There was a period of time in-between shooting the commercial and taking the photo stills that I thought she wasn't going to be able to continue. In true Kayla form, she pushed on and made us SO proud! We aren't sure what lines they will use or which photo, but we do know that it felt so good to help out. The best part is, once editing is finished, they will get us a copy of the video shoot and all the pictures they took! I know there aren't many people who get their child's picture taken with a lens that good! Would I trade it all for her health? YOU BETCHA. But since we are here.... I'll take what little blessings we can get. :)

And if that weren't enough action for one day, the TPN nurse just left the apartment. (It's 8pm) We had to get Denny "checked off" so we can officially be allowed to administer Kayla her TPN here on our own. She got a really cute bumble bee back pack that we will now carry with us and a portable pole for the apartment to give her arms a break. She slept through all of it. She is beat! The nurse was awesome. She said that all of the other nurses told her how incredibly capable Denny is. She said she was just her for "formality". I love it. Haha... 

Ok, off to go hit the tiny blue couch. Modern Family is on. We are going to try and pretend life is normal... at least for 30 mins. 

Good night all!