Wednesday, December 28, 2011

December 28, 2011

Hello Everyone!

Today was a nice and easy day (as much as an easy day at SJ) can be. Kayla didn't have any other scheduled appointments besides Radiation. It was bittersweet. We got to sleep in because it wasn't until 11:00, but she had to be NPO until then. She was really hungry. It's always so hard to see your baby hungry.

We drove into St. Jude and didn't have to mess with security. I finally asked a family who has been here for way too long what the secret is to all of these people being able to fly through security without having to stop. It was like a secret club that we needed to be a part of. Especially on the days where we were running late! The answer was simple. We needed to apply for a temporary parking permit (good through the summer) from the security desk at the hospital. Well Duh! It's simple things like that which make the morning go so much easier. Especially when you get the same guard every single day asking if you are there to see a patient. I know she isn't bald yet, but clearly our patient is in the back seat! How does he not recognize us by now? Anyway, that is nice to have that frustration behind me. It was a relief today to have us just waved through without having to stop!

We had some time so we stopped by their library to exchange a couple of books. It's a wonderful little library with a very sweet librarian working there. She loves it when we come.

The minute we walked into the Radiation Oncology waiting room, we were called back. What great timing! Kayla was laughing and joking with all of the nurses and techs in the room. She is really so funny! Everyone in there just adores her. She has everyone putting down their pencils just to listen to her questions and stories. Oh and we just LOVE it when she tells embarrassing tales about us. Thank you Kayla!! We love you. Why is it that kids always know exactly how to do that? I remember all of the funny stories that Mrs. Weiser (Kayla's wonderful Kindergarten teacher) used to email me about. Oh if she could see her now!!! It would bring a huge smile to her face. Mrs. Weiser, this morning while checking her in for the day, Kayla would have cracked you up. The sweet and unsuspecting woman was wearing this pretty necklace made out of what looked to be like aquamarine. Kayla was in awe of it's beauty. OH and matching earrings? Dangles? Nothing could shake her focus. She wanted to know everything about it. Not what it was made from necessarily, but where she got it. And was it hard to find? Where could we go to get one? The woman was so sweet explaining that her daughter bought it for her birthday. It was her birthstone. Kayla's eyes lit up. She knows that her birth stone is an Emerald. This conversation went on and on for about 5 minutes. In the end some mini-dangles were promised to her. Kayla will never let this woman forget it either. It was hysterical!

Anyway, back to my story about Kayla about to have her treatment. So, one of the techs that we just LOVE is named Jody. He is such a sweet guy! He has a soft spot for Kayla now. So, anytime he sees our name on the schedule (even if he isn't scheduled to be in our room) he always stops in just to say a few words to Kayla. He loves how many questions she asks. Apparently he has this book that his kids have outgrown that is geared for her age. It has answers to a ton of kid questions. He said he is going to try and find it for her. Today she mentioned that the picture that some kid drew of him that is taped to the cabinet is not accurate. She said it doesn't look anything like him. We challenged Kayla to top that drawing with a new one. She worked on it really hard in the craft room tonight. I can't wait to show it to him. He is the oreo king. When Kayla wakes up, he is there turning regular oreo's into double stuffed. He is just so kind..... we can't wait for him to see his picture tomorrow.
Here is Kayla's Picture!
Pretty good, huh? (oh, and in the bubble are the oreo's) To be fair, I bet the person who drew the first picture was a LOT younger! Cute though. I'm sure he will love it!

When Kayla woke up she did great! When we first walked in, she was sitting up drinking apple juice which really helps her to get over the dizzy feeling. They were helping her with her shoes! I couldn't believe it and went for my camera right away. This was a first! The way she looked, we half expected her to just hop out of bed. Unfortunately within a few minutes, she was curled up in her bed in the fetal position writing in pain in her tummy. It's right where the radiation is targeted. So, it's quite normal. It does go away quickly though. After a few minutes of trying literally every position and getting nowhere to help with her pain, her daddy swooped her up in his big strong arms and carried her out. She quickly quieted down and we all just looked at each other with a slight look like, it's all good now. That was it for the day! We came back to the target house so Kayla could eat while I tried some more trouble shooting on the internet again. It went down and I hadn't been able to get it up and running.  Honestly, there really wasn't anything new to report anyway. You all know I love doing the blog. I love that this is my diary for Kayla. Her journey. Her story. Her memory when one day she will want to read it.
 Jodi handing Kayla one of his double stuffed oreo's
 Here is a nurse admiring Kayla's new fabulous shoes and lacing them up for her. Looks like we will be on our way...... or not!
 From the above, to this in 5 minutes. She hates this picture. She realizes now that everyone was on the FLOOR trying to make her comfortable. Tomorrow we will try a new strategy. Straight to daddy. No wagon or wheel chair. We shall see....... ;)
Jodi put his oreo's in a take home bag. We all cracked up when this was the only bag they could find!

When we got back to the apartment, we had our first Netflix movie waiting for us in our tiny mailbox! One more slice of normalcy please. Thank you!!

Tomorrow we start at 8am with Physical Therapy. I will post more tomorrow.

With Love, from Memphis


  1. OMG I love Kaylas picture of Jody!! She is such a talented artist. He is going to fly through the roof and make 20 more double stuffed oreos when he sees it. I am glad that things are shaping up! Those cringe worthy moments are just to remind you of the warrior that Kayla is that she is fine most of the time, putting up with the pain, being the caveat of strength at its finest. I love you all very much! Text me when there is time to chat. Miss you bunches!

  2. I LOVE to hear about Kayla's sense of humor as she faces what no child should ever have to. Despite the hardship on her, her spirit is SO STRONG. It will carry her through both emotionally and physically, with the help of her AMAZING PARENTS AND LITTLE BROTHER too! The prayers continue from our home to you! Thank you for sharing your journey and never feel obligated to us. This is all about you and your rest and well being is paramount! XOXO

  3. Oops...forgot to say WOW about Kayla's picture! ;-)

  4. Tell Kayla we loovve her picture! I couldn't have done it better myself!;)