Thursday, March 22, 2012

Day +3

Lately there have been no dull days around here at St. Jude. Our days have been non-stop. We are so glad that the TPN is now in play. It sure takes a lot of my worry and frustration away. At a minimum I am certain that Kayla's body is being nourished.

Today Denny took the kids to the Hospital so I could do errands and clean the apartment and do laundry. Just because we have a child with cancer, chores and errands don't stop! And that is fine by me. I scrubbed the apartment down from top to bottom. It is nice that it's small in that way... it's easy to clean! Even though they have someone come in to clean the bathroom once a week, it's just not as thorough as I like to be. Plus the mop is dragged from room to room. How sanitary can that be? Yuck! So, I usually clean again after she is finished. I know... a bit of a germ-a-phobe.

Kayla has been VERY tired. She sleeps a lot. Today at the hospital, she slept for 3 hours. Two while they waited for an appointment and she slept during the hour she got her G-CSF injection. We were concerned over a new rash she had on her stomach this morning. It was terribly itchy and red. We were happy to know it is just a typical side effect and not to worry. Funny how that makes you happy. I went to pick them up and it was gorgeous outside. I talked everyone into going outside for a while to play. Kayla rested in a chair, but it felt so good for her (and all of us) to get fresh air.

 We had the whole place to ourselves today

Anthony's face here says it all. I need to get up there!
4.5 years old... and thriving. Just a goofy joy! We love our Anthony!!!
Doing anything we can to keep Kayla laughing and entertained

Kayla and her bumble bee filled with nutrients!

We headed back inside to watch a movie and relax. Before we knew it, it was 5:30 and time for our voice recorded interview. Yes, like I said... not stop action around here. We met down in the Amy Grant room. Again, we found the staff to be kind, caring and so grateful for our help. The project they are working on now is a commercial that will air on the local radio stations (sorry local friends... you won't hear this one). It will be snippets of some stories from families here set to music. It was fun, but much different from the TV commercial yesterday. For starters, we will request questions in advance so we can do an even better job for them. Of course we had an idea of what to expect, but there will be a lot less ummms while we search for the right words. I think they still loved what we did, but still! One thing that threw us was when we were asked if there was a story we wanted to share of something Kayla did that is really funny. Our minds went blank. The kid is hilarious. She does funny things all the time!!! But, we couldn't think of one. Other then that, we answered all of the questions and some! We are so happy to help such a wonderful organization.

Country Cares for St. Jude Kids® is one of the most successful radio fund-raising events in America. Since the program began in 1989, to date nearly 200 radio stations across the country have participated and raised $200 million in pledges for the children of St. Jude Children’s Research Hospital. Through the program, radio listeners are given the opportunity to call in and become Partners In Hope®, by making a donation to the hospital.
In addition to station and listener support, more than 100 country artists have given their names and time to Country Cares through recorded appeals, visits to St. Jude or call-ins to radiothons. These stars include Randy Owen, Brooks & Dunn, Garth Brooks, The Dixie Chicks, Tim McGraw, Faith Hill, Lonestar, Clint Black, Keith Urban and more.

Denny setting up Kayla's TPN and flushing her lines. This happens daily.
 Kayla slept through the whole thing
 Look at how much bigger AJ is than Kayla. He is 3 years and 3 months younger! Crazy!!

After her snooze, she woke just long enough to take a few bits of one pancake. It was the one thing she thought she might be able to eat for dinner. I will try ANYTHING and everything to get her to eat. You think of it, we've tried it. Trust me! And nothing is low-fat in this tiny fridge. 

We start at 9:30 tomorrow. Kayla is doing ok. She is getting through it. We all are. One round down, three to go!!!! Go Kayla GO!!!!!!!!  We love you all. Thank you so much for reading her story. It means so much to have all of the love and support behind us like we do. THANK YOU!


  1. Thank you thank you Annie for continuing to take pics when you can to keep us feelin like we're in the loop. It means a lot to feel informed, even if it's just every other day of what all is going on. I know it's exhausting at times to muster the energy after days like you guys have, as well as emotionally exhausting. Just know it is very much appreciated. You guys are constantly on my mind. Love you so much. -Tiff xoxo

  2. Way to GO Kayla for helping St. Judes out with the TV shoot!! What a helper you are, even when you aren't feeling great!! I'm praying lots for you and your family. You are in the perfect place to be taken care of. Praying that you have good nights sleep tonight!

  3. Awesome you guys are keeping busy. And doing great things, like helping out St Jude. Its always great to be positive, when life gives you a bad situation =(. I am happy Kayla is on TPN. That will help her a lot I bet. Don't think of it as a failure, or defeat. But as something Kayla needs right now, to help her to be healthy. I bet once all of this is over, she will love food again. She will probably want to go out to an all you can eat buffet. hehe. I am so happy you all are taking such good care of yourselves, being their for Kayla, and enjoying yourselves as much as can be expected. Its really great that you all are so positive. Deff. an inspiration for myself and my family <3 Much love to you all, and miss you guys!

  4. We are Ireland and Michaelanne's grandparents. We have checked into your blog and have been praying for your darling Kayla Rose every day. All of you are providing a gentle and loving support for her and for one another. We are so moved reading your positive and inspiring words. Kayla Rose is wrapped in the goodness of your love. God bless you all.
    Ireland and Michaelanne's "Mama"

  5. With her pancakes, just to add some extra nutrients, have you tried coconut milk instead of milk? It's sweeter, might stimulate her appetite all the more. (I have a diabetic husband who gets picky about food, especially when his sugar is low. Hope this helps. Love reading the blog! Rooting for Kayla!!


    Allyson Stallman

  6. Hi Annie,

    I don't know if you remember me, but it's Angie from sweet potatoes(Next door to your mom's salon). I had heard from Terry and Avi about Kayla and have now stumbled onto your blog. I have read through a couple and just want to send my prayers to you and your family. You are such a strong woman and have such great support from your friends and family. Your daughter is still as beautiful as i remember her, it is great seeing her smile :). I know that she is receiving great care at St. Jude's, keep up the positive energy!!