Tis The Season

This is exactly what we have been waiting for.  Our holiday do-overs.  

This week the kids went back to school after a wonderful week and a half off.  I am sitting here staring at our little Christmas tree that we picked out with care last Sunday night.  I have been going through old blog posts from this time last year and cannot believe how far we have come.  Actually, I have been working on putting this blog into a hard-cover book that the kids will be able to read one day.  Both of them, especially Anthony, are too young to truly understand all that has happened.  One day, I want them to be able to read it.   Have you heard of Blurb?  It's a book building website that gives you a free program to download.  From there you can create your own books!  It's basically a much fancier version of what snapfish and shutterfly offer.  I needed something that could hold the hundreds and hundreds of published blog posts and pictures.  I have used this company in the past and have been so impressed by the quality.  The best part is, that it made downloading my blog simple! I just entered my blog address and password and voila!  Well, not quite that simple. Is anything really? I still need to go through and consolidate and re-size pictures.  So, I have been spending hours editing.  I have known that I needed to do it, but it's just a really tough project... mentally.  Going back and seeing these pictures.  I can't believe this is us. I can't believe this happened to our family.  I think I have been in shock. I think I still am. No, I know I am.  So there are lots of much needed breaks I have to take in-between to compose myself.

Christmas Eve 2011

Yesterday, I found myself staring at the pictures of the balloon Christmas tree we had last year. Pictures of Kayla taping paper ornaments onto it that we had cut out. Simply trying to make the best out of a situation we were thrown into.  Her parents trying to keep magic alive for a 7 year old girl who believes in Santa with all of her heart and loves Christmas.  Anthony was still home and hadn't come to be with us yet. My heart was aching beyond words for our family to be together and for this to all be a bad dream.  As if it weren't bad enough to be going through what we were, we had to spend Christmas away from Anthony.  I remember crying so hard each and every night missing him and the energy he brings to our family.  Craving for that piece of normality to return to us. On January 5th, we were a family of four again.  Radiation had began and we had no idea what to expect.  We were scared, shocked, and clueless.  I remember waiting until the kids were asleep in their room before I would completely lose it most nights.  Denny would comfort me and hold me until I had no more tears left to cry.  He would grab me ice bags for my eyes and just hold me. We would stay up way too late expressing every emotion that we had kept in throughout each day. I tried to stay off of the internet as much as possible.  Seeing posts about friends and their families doing normal things was like a stake through my soul.  We should have been at home surrounded by family and friends too. Or complaining because our kid had a cold or the weather was just atrocious. Writing this blog was my biggest form of therapy.  With each new day, was another procedure or step towards trying to fight this monster. With each new day, I had new feelings. It was nice to have a place to be in my head to share what was in my heart.  So thank you to all of you who have let me vent.  To all of you who make me know that I'm not alone... still.  I am forever grateful for your loving words and prayers.

Right now, things are wonderful! Right now, we are running and playing and just so grateful. From birth, Kayla has always been a very serious girl. Always striving to do what she is told and of course to be a perfect student.  We joke and call her a little old lady.  She carries the weight of the world on her tiny shoulders. It's always been a challenge to get her to be a silly care-free kid.  Now, knowing all she does... seeing all she has seen and continues to, it has made her even more serious.  It's our constant mission to get her to just have fun and not worry so much about doing everything perfectly. Just to lighten up a bit.  We do have breakthrough moments, but she is who she is.  She has always just been so easy.  So incredibly easy. Such a kind soul.

Two nights ago, Kayla hit her highest weigh yet! 40.6 lbs!!!!  Her cheeks are full and pink. Her bottom no longer hurts when she sits on a hard wooden stool or chair. Her hair is a little over an inch long and is dark! It's the softest hair I have ever felt.  I know I posted that Kayla had finally started piano lessons.  I just have to brag a little. Her teacher told us on Wednesday at her 8th lesson, that in the 34 years of teaching she has never had a student pick up and retain music like Kayla. That she only has to show her something once and she's got it!  I am so incredibly proud and happy to hear that not only is she loving it, but that she is really good at it too!  Happy Happy momma!!!

Have you all noticed all of the St. Jude banners and commercials? When I am online, I am amazed at how many companies have it displayed. I LOVE walking into our local stores and being asked if we want to donate.  I wish it was all year long.  It costs $1.9 million dollars per day just to open their doors.  If it weren't for those doors opening every single day, Kayla would not be doing as well as she is today. No other hospital treats the entire family and does all they do to keep your mind focused on life AFTER cancer.  No other hospital gives families hope when other places utter the words, "we recommend you go home on hospice... nothing more can be done". I have witnessed many, many families who were told that they should just take their child home and make them comfortable... and after coming to St. Jude are still alive today. I have always donated here and there to St. Jude before this. But never regularly.  Denny and I decided that we need to make that monthly pledge. We have seen first hand how much those donations do and we are eternally grateful for the research and all they do for families facing this terrifying disease. We became a Partner In Hope.  It's easy and is less than the cost of a pizza! I can donate one pizza per month to help keep those doors open. I cannot even imagine how we would have paid for all of the treatment she has had and the check-ups to come. Insurance only covers a portion and there is a catastrophic max.  Denny, Anthony & I will never be turned away by a doctor because we have met our max. Thanks to St. Jude and donors, we know Kayla will be in the best care possible... forever.  We have too many friends still there. Still fighting.  Still hoping to be home as a family one day too.  So with tears in my eyes I want to say THANK YOU. Thank you. Thank you if you are asked if you want to donate by the lady bagging your items at the check out counter and you say YES.

This Thanksgiving, I am just so thankful for where we are today.  So thankful to be a family of four at home.  Decorating a real Christmas tree.  Spending Monday-Friday taking the kids to school and working on homework instead of watching Kayla get sedated for Radiation that would penetrate her brain and spine every day. Still not knowing what future side effects will be in store because of the havoc that treatment will cause. I am eternally grateful for normal days.  I will never take them for granted for as long as I live.

TWO GG's and cousin Jessie. Thanksgiving evening.

 Christmas tree shopping makes you giddy!

In the air with JOY and excitement for this much needed do-over

Kayla's next scans will be January 9th and 10th. So far, she's doing great and is showing us no worry signs. Please continue to pray or light those candles. Thank you!