Sunday, April 1, 2012

Day + 13

Sunday Fun-Day!  We got all good news from the hospital today.  Kayla's ANC is up to 900! She is starting to gain a little too which is SOOOOO good to see! She weighed her highest this morning since returning to St. Jude at 17.4 kgs (38.28 lbs!!!) She has made it her goal to surpass 18 kgs before starting her next round of Chemo.  We have also gotten a proposed start date of April 11th for round two. You never know if something could change it, but we are hoping that things continue and she has not hurdles that make the start date delayed for any reason.
The "band man" proudly sporting his "curing kayla rose" wrist band. He was thrilled to have it.

Donna has booked her flight to come out to be here with us for round 2! It will be so great to see her. We all miss her very much. Not only will it be good for everyone to see her again, but I will get to spend some much needed time at the hospital with Denny while Kayla is in the worst of it while she hangs with her godson. It has been very hard not being able to be there to help comfort Kayla myself. Can you even imagine? Thank goodness for Skype because it's the only thing that kept me sane when I couldn't be there. Honestly, it's priceless. Kayla's numbers continued to climb and we know we don't have too much time before we go through this roller coaster again, so we decided to surprise the kids with a fun splurge! We took them to see The Lorax. What a wonderful movie!!! If you haven't seen it yet, GO! I know it will be one we end up buying for sure. Kayla donned her blue mask and we were just so glad to finally be able to get out and do something fun! We were in the bathroom after the show and a girl came up to Kayla to tell her how beautiful she is. This little girl was maybe 13 years old. I could tell she wasn't just saying it. She was a special and very kind girl to go out of her way to pay Kayla a very sincere complement. It made Kayla's afternoon! :)

This afternoon, Kayla had a lot of questions about her cancer. She wanted to know if we had ever had cancer or if we ever would. She wanted to know if it could come back. She wanted to know if cancer can come back in other places. She asked if we knew that this would be our last time here. I was honest with her. She is so bright. Bright beyond her years. I have always known Kayla was an old soul. There is just something different about her..... I explained that we just never know what can happen but we hope and pray every day that this is the only time she has to go through this. I explained how much harder it is for an adult to go through cancer treatment and how it's amazing how these kids have more luck bouncing right back. (we mentioned a few friends here who are doing just that). She said that she is very glad she's going through it now as a kid and not an "old person". She couldn't imagine how hard it would be to have those bones hurting they way they must. I told her that we have been SO proud of her for how she has been battling this so far. With light in her eyes. With laughter behind her words. With a bounce in her step when she can. We keep laughing. We keep having fun. We are determined to win this with our heads held high. It's not always easy, but it helps so much to have all of you supporting us and rooting us on. I can't express in words what it feels like to have people we have never even met, whom we consider friends now. It's an amazing and very love-filled feeling!

So, I write this blog for me. I write this blog for you. I write this blog for those who we know and those we do not know. I write it to share my thoughts, our hard times and our happy moments. I write it to give hope to anyone who has just been diagnosed or knows someone who has. I write it to remind those who have battled and won about the mountain they climbed and how proud and happy they should always be to be standing on top! I write this to share with everyone our need for research and a cure! But most of all, I write this blog for Kayla. This is her story. Her battle. Her courageous fight for a long and beautiful life. A life she deserves to have... I am a very lucky mommy.


  1. What great news to hear about Kayla! She's gaining weight! Amazing. :)

    I was trying to take them to see The Lorax before you returned to St. Jude; she REALLY wanted to see it, so its comforting to hear that she and AJ accomplished their movie goal......

    Nice to hear that Donna is coming out too; I wish I could come to help support, but who knows what the future holds? I miss you all so very much.

    Also good to hear that our Kayla is filled with the questions she has. She's so lucky to have both you and Denny to tell her the truth in the passionate way that you do. You're such great parents to her, and I'm proud of that.
    Beaming with pride, in fact.

    And tonight I realize that I'm a very lucky Grandma (Neena). You are all such gifts from God and I'm so blessed to be your Mom and Neena. :)

    Now if I could just find out where to get one of those wrist bands to support Kayla......hmmmm, couldn't find it on the Zazzle site. Suggestions?

    Keep up the good work on the Curing Kayla Rose train! All aboardddddd!


  2. Beautifully, perfectly said, mama! (Sniff sniff ;) There are no words to say how wonderful and amazing you are! We love you! xoxo Lea

  3. So relieved to hear the wonderful news about Kayla, her counts, her weight gain, her brilliant mind and her peace. I love you and miss you all SOOOO much. Let's skype soon! Can we make a date???? :) ---Nicole