Monday, June 11, 2012

Day -2

So, today started out with a little bit of a twist. Last nights labs showed that Kayla's potassium levels had dropped. Not really too big of a problem. They would give her potassium supplements through her IV bag to get them back up to where they needed to be and we would re-check in the morning. Well, in the morning, her labs showed that her potassium hadn't responded at all to the supplements and also, her magnesium had dropped as well. So, more potassium and now magnesium would have to be given again and her blood re-checked to make sure her body was in a safe and stable condition to receive her chemo.  Each bag hung for about 2 hours each and couldn't be given at the same time. Once that was complete and her blood was re-checked, all was clear. Today, Kayla received her FINAL doses of Cyclophosphomide and Mesna. Kayla is a trooper and her body has remained stable since. Unfortunately, but not unexpectedly, her body still continues to have fevers that come and go. Multiple tests have been given to determine what is causing them. Instead of getting annoyed and assuming they are "normal" like always, I am finding myself extremely grateful that they have all continued to come back normal so far. You never know! Fevers around here are no joke! Thankfully, all is good so far!  Kayla received her VERY special legacy beads today. She will be very proud of these ones once she is feeling more like herself again.

The Green Beads are for the Chemo she has had this round (an early one for the Vincristine she will get on day +6). The blue bead is for Kayla's stem cell rescue. The Flower is for the end of BMT Transplant, meaning the last time she will receive her own cells. The beautiful silver one? That is my favorite. That means "NO-MO CHEMO"!!!! That's how they say it here.  :)  How beautiful is that silver bead?

Skyping with "Sissy"
Tonight, Anthony built a fort in-between the two twin beds. He was so excited to sleep under it calling tonight "the best night of his life". That brought me to tears. Really? Not sure if it was because this shouldn't be the best night of his life or because it probably really has been the best night in a really long time... Just ready to create nights ahead when we are home that blow this "fort" out of the water!
When you are only four, it's the simple things.  Out of all of the things that have happened here, I bet he will always remember this fort!
Good night Anthony......


  1. A lesson to us all to enjoy the little,simple things in life!
    Can't wait for you guys to come home!!
    <3 <3 The Barr's

  2. That silver bead is spectacular! No-Mo Chemo! YAY!!!!
    - Erin S.

  3. Rejoicing that this means No-Mo Chemo!! Love the beads, but especially that beautiful silver one! Perhaps this is the best night of his life because he knows the end of treatment is in sight and his Kayla will not have to go through it again! I have some bracelets inspired by a boy about Kayla' age, Dylan, one of our team honorees who was diagnosed with Leukemia (ALL) in 2006 at age 4. Each morning he would awaken & ask, "What are we going to do today?" No matter the answer he would enthusiastically declare, "This is the best day ever!". Recently (now 9 yrs old), he shared some insight. "When I was little, I started saying 'This is the best day ever!'. Even when I was sick & on chemo, I said this because for me every day is like a journey. I really like adventures and I think I am lucky to have had so many experiences. I have always known that not everyone is able to enjoy their life, like a precious journey, but I always think that If I can smile and make the best of every day, maybe that can help other people be happy too!" Before training & our endurance events our team shouts, GO TEAM! THIS IS THE BEST DAY EVER! We try to make it that for Dylan, Emilie, Hanna, Matthew, Kayla, and all of the precious young ones that are fighting this monster, cancer! Praying for your brave girl as she goes through this last battle!! Love you.

  4. Beautiful beads! I'm with you on the silver one...hooooray, no mo chemo! As always, you're all in our hearts, thoughts, prayers. Love and hugs, AuntieAnn

  5. This is a wonderful moment to finally be coming to end of this stage of life's journey. We have kept you all in our thoughts daily. Carli asks about Kayla almost as regularly as she does about dinner. You know Carli loves her food and that is always a top priority...and Kayla has been there at the forefront of her thoughts. We have worried and hoped these long months while you have been gone and just want to give you guys hugs. Quite simply the hugs we gave you guys before all of this began were simply not big enough or long enough. We love you.

  6. "No mo chemo"...that is wonderful! Still praying and I am looking forward to hearing that you are on your way home!!! Kayla, you are one tough cookie!!!

  7. It's my birthday today (12th). What a nice thing to read about the silver bead. Kayla is in my thoughts every single day and I breathe an "ahhh" to read this entry and I'm sending her my own birthday wish, which is to find happiness in this next year. I hope her happiness takes the form of renewed health and to always know how much she is loved. Cate x