Tuesday, January 3, 2012

It's been 8 months

It has been 8 months today that we found out that the tumor in my little girls brain was a very aggressive from of cancer. The worst day of my life besides the day we found out she had a tumor. I still haven't written about those first few weeks finding out about the tumor and the diagnosis, one of these days I will. It's still emotional and hard to think about it. I really can't believe its January and it has been 8 months! I still feel like I am living in a dream and that my daughter having cancer isn't real.  Its weird to explain but both Kip and I feel that way. We have gone through the motions of life but we still feel like it is still May 2011, when she was diagnosed, that it's all a dream and we will wake up and it will be May and everything will be fine. If only that dream would come true! Its been a long road but has gone fast at the same time. Jaylie has done so well so far and only has one more round to go! I am beyond excited! And she is too, she has been telling me lately that she is excited for her hair to grow back. She knows the end of chemo is near! We just hope that her hair will grow back everywhere especially in her tumor bed area where she had the radiation boost. Sometimes it grows back in that area and sometimes it doesn't or its very thin.  I would feel bad for her if it didn't grow back well and she had to deal with that  her whole life too, but good thing for hats and headbands. We are going in on Thursday to check and see if her blood work is good enough for her last chemo round this weekend, but we might have to wait till next week. Everything was good enough last time we checked it except her platelets, they were only 40 and they need to be 100.  We are hoping her body makes a lot so we can go in this weekend and get the chemo over with. If not, no biggie, we will go in next week for the chemo. She has been eating really well the last few days which is great, because she hasn't been eating much lately unless its bread. At least she eats whole wheat bread  :) We have been going though lots of it. Jaylie is doing well though and has been feeling really good except for being tired and getting tired more easily. Her teacher came today, she is so wonderful! Jaylie absolutely loves her! We havn't seen her in a while, so it was fun and Jaylie was so excited. After though she told me that she could tell she is more tired and its taking her brain longer to process information.  I'm sure after this last round she will bounce back well and get all her energy back. She is such a trooper and is my little hero. I love being her Mom.

I haven't updated about my nephew Briggs in a while. He is doing well. They were able to take him home about a month or so ago which is so nice for them. They went home with his feeding tube in but were able to take it out a couple weeks later because he was gaining weight and drinking more from a bottle. We hope he will keep gaining weight. The doctors are thinking he will probably still need more surgery to fix the vsd (hole) and the coartation again but at the last appointment they said there is a small chance his body will fix itself and he won't need surgery. We are hoping and praying for a miracle that he will be all healed and he won't have to go through more surgery. If they did do surgery it probably won't be for a few more months, so he can get bigger and stronger. He is such a cute happy little guy.

I found out a couple days ago that my friend from San Antonio is about to have a baby and they just found out he has a coart from an ultrasound. Its so sad, what is weird though is that this friends nephew has a brain tumor and was diagnosed within months of Jaylie. Both of our families in such similar situations. Life is hard. I hate that others have to suffer what I have because I know how hard it is.

Anyways, things are good around here and we are excited to get this last round of chemo over with!!


  1. Just wanted to say hi and let you know that we are thinking about you guys all the time. Denise is my sister and my son is Drew (ww.teamdrew.org). The similarities of our circumstances are astounding and we pray that we will all continue to have similar outcomes as all of our babies are healed. So glad that you are nearing the end of treatment and that Jaylie has been doing so well!

  2. I can't believe it has really been 8 months. It still seems unreal to us as well as we've all experienced anxiety, heartache, miracles, and many blessings throughout this 8 months. We are so glad Jaylie is on her last treatment, and stayed so strong! It's amazing how much children teach us. I'm thankful she has done so well! Give her a big hug from us, and tell her to keep being strong! We love you guys and miss you tons!! Tell Jaylie we can't wait to come and visit her when she is done!!