Tuesday, December 20, 2011

2 weeks in Memphis

Today has started out busy, but I have some down time right now while Kayla is recovering from sedation.

First, we met with the dentist here who will be doing checkups every 3 months. They took an x-ray today of her mouth and it was the coolest machine. Very state of the art. They were thrilled that we have such great care back home and that she already is doing fluoride treatments. She was told that she has 22 teeth right now. Kayla thought that was pretty fascinating.

After her dentist checkup, we headed over to Radio Oncology to meed with Dr. Pai. He was so blown away at the amount of improvement from last week to now with her mobility.  It's due to all neck rubs she has been getting thanks to her dad mostly.  Last night, Dad was really able to rub it the way we had been needing to, thanks to great distraction while facebook video chatting with Donna and her kids. I keep forgetting how bad that last visit was with Pai. All the doctors and nurses comment about how cute she is. I think it's partly because of what comes out of her mouth. Her questions keep everyone in the room laughing. I made sure to give the doc a print out of the huffington post article about Johnson and Johnsons. (turns out he already knew!) I'm glad he does his research!! I made sure to give him some better alternatives to share with is wife for his own daughter. He appreciated it. ;)
Here is the link on Huffington Post for any of you who are curious: 
As we walked down the hallway, Dr. Pai was very happy to see how great Kayla is walking. How her balance seems untouched. It's one of the many blessings I am counting. I mentioned to the doc some of the symptoms I am starting to see... the skin by her eye last night and that her hair is shedding. He was surprised that we noticed so quickly and noted it is probably because we know her so well. It's true. I feel this is also why we found the tumor so quickly. We have had seven years to get to know that child. One thing I find so great about St. Jude is that they really look to the parents to tell them what our kids need. They understand and appreciate all the knowledge we can bring to the table to make things better for our kids. I love that!

Denny got to go and watch her radiation treatment today. He said it was AWESOME. He said I am really going to like watching tomorrow. I just couldn't believe how quick it was. It was maybe 15 minutes. I wish I could take pictures to share with you all, but that is not allowed. From a legal standpoint, I totally understand.

Once she is ready to roll, or walk, we will head on over to the cafeteria to pick out some calorie packed food for her. We have to make what few bites she will take count. Her stomach has shrunk so much that she just gets full so fast.

We only have a check up with Lizzy (her main nurse who works for Dr. Gajjar) and speech therapy.

They are having a fun thing back at Target House tonight where the kids will get to do more shopping for the parents. I love that they include us too. It's so thoughtful and the kids really love doing the shopping.

Last night, Kayla got to decorate a gingerbread house. She had a lot of fun!  I think it looks great too!

I love the frosting Icicle! Pretty cool (even if it was unintentional)

Here was one more picture I took from yesterday that I forgot to add. The sky was so pretty when we left, I just had to capture it

Kayla is now out of sedation and has eaten. Today was the first day she did not wake up crying!!! 
We are SO happy and relieved. We met with Dr. Gajjar. We have now completed 5 of the 30 radiation treatments. She is doing great so far. We just hope and pray it stays this way.  


  1. Annie,
    I was just telling Greg about the Johnson and Johnson thing today-it was from a link that Marie Rios posted on FB. TIme to get some more Sprout!
    Love ya, Tracy
    PS Love Kayla's smile. :)

  2. Hey Kayla --

    Looks like you had a really good day today, learning about your teeth, getting the treatment over with quickly and no crying! Great job!

    Also, I LOVE THE GINGERBREAD HOUSE! They are so much fun to make. I always remember each one I make (especially with YOU!).

    I love you (and your parents too) !!!


  3. I love hearing about your days! You are an awesome team!!
    Beautiful sunset pic, x's in the sky remind me of my dad, Uncle Ken.
    Keep up the good work, Kayla!
    Stay strong, you all!
    Emily (Carter) Aufdermaur

  4. Stay Strong Kayla! I love the pics and the updates. Each day Carli ask what Kayla is doing today. Carli really likes her gingerbread house...especially the little gingerbread person. We miss all of you so much and look forward to when you will all return. I am in awe of the strength that all of you show each and every day. The fact that you are now able to go into a procedure and find it "Awesome" is a wondrous thing. I love you guys.

  5. Kayla is 1/6th of way done with her radiation treatments. Way to go! Thinking of you all - always!
    Love, Melissa