Friday, January 20, 2012

Do's and Don'ts

Day 24. Week 6 complete.

This is Chance. He is one of our very favorite faces down in radiation. As much as we will not miss radiation, we will miss him and some of our friends that we have made here.

In the background, you can see Aaron, one of the awesome volunteers,  in the child life room drawing with Anthony. He has SUCH a talent. Last week, Kayla requested that he draw Scrat from Ice Age. Aaron made good on his promise today. (We ran out of time last Fri. since without sedation Kayla is in and out so much quicker!) Here is his promised drawing.... WOW!!
Before Kayla colors more on it, I had to post it! So awesome :)

Aaron inspired us to get creative so we headed over to T2 to spend some time in the Art Room.  There were a few tours going on. I know that it is so important that St. Jude let the public in. Radio stations and a lot of public figures come through to keep the donations rolling in. It's great! I get why they do it. It's just that when you are sitting in the Art room w/ your children minding your p's and q's it's not a very nice or happy feeling watching a woman hang back from the group only to stare into the window with the most pathetic sad face... her lip in a full pout. Really??? I understand you don't understand what it must be like on the other side of that glass... Kayla has no hair. So what! Just because Kayla has no hair, she is STILL the same kid! She doesn't need pity. We don't need pity!  WE ARE FIGHTERS, NOT VICTIMS! As if that weren't enough to drive me a bit batty, one guy who was lagging on the next tour thought it would be a good idea to snap a picture of us... or Kayla. (they do have signs up asking people not to take pictures, but this guy was not being watched)  I am having the hardest time when we get this reaction from people. I am starting to find myself asking Kayla to wear her hat in stores. Not because it's cold, but I don't want her to catch wind of the staring! So far, she doesn't let it bother her. Maybe it's only the protective momma in me. I just find it so beyond rude. I can say that when you have never been in this situation or known someone who is, you don't know how to "react". Some might think that giving a mom a sympathetic frown might make her feel like she isn't alone. Not so much! I appreciate the people who just smile and talk to us as if there was nothing visibly different. I appreciate this more then I ever thought I would. It's an act of kindness greater then a hug even. Just treat us as if we are normal. We are!  I promise. 

Ok, that being said, I thank you for letting me vent about this. I do feel a tiny bit better. So, when you see us in Target soon, no rubbing her head for good luck, ok??? You can rub Denny's though, you may even get his leg going a little bit, ha!....... ;)

Tonight Kayla had a nice healthy meal... breadsticks and pizza! Anthony asked if he ate all of his dinner if he could have dessert. I told him, "this IS dessert"!!! 

          Kayla got her buddy dressing changed. She still hates it. It still requires blankie on her head. 

 We are still working on getting some meat on these bones.....

 We look forward to a time in our life where we can forget the steps to this process and what these bandages and tubes of heparin are for.


  1. I went to dine and donate last night and it was great!! I loved it!!Love u and stay strong Kayla!!

  2. Anthony, Keira says "we love you and miss you at school! We can't wait until you are back in Novato and with us! keira keira