Sunday, August 28, 2011

A Little Tired

We have been home for a whole week, it went by pretty fast. Jaylie is doing well and is feeling good. The last few days she has been pretty tired. She fell asleep on the couch Friday, Saturday and today. She will probably continue to feel more tired everyday. She still doesn't complain of feeling sick or bad. She has pretty much been herself, just a lower key version of herself. Her counts were the lowest that they have been throughout this whole journey so far but they were still fairly good, or good for a cancer patient they say. She didn't need a blood transfusion and we are hoping she won't need one this week when she goes in on Thursday. They said she might but we are hoping her counts will be good enough not to have to do that. She did great at her appointment this past week and was so brave getting poked. They had to put a window (clear sticky tape) on over the port to help protect it. She hates the windows so much and is so scared to pull them off. It is hard to see her so scared and to see her having anxiety and having to go through this crap. I hate it. My mom got emotional at this appointment. I don't see her get emotional too often, she is such a strong lady and I am thankful for her. Jaylie loves her coming to all the appointments, she gets so excited to see her. Jaylie really has been amazing and God is amazing. We have seen so many great things happen and have seen miracles in our lives and in Jaylies.

I saw this picture of Jaylie that my brother Scott took back around Christmas time. I have never seen it before, he just posted it on facebook. Her hair was gorgeous and her face was so full and she looked so healthy. My heart broke again seeing it. It is hard to remember the times before the brain tumor. Things are so different now, we are in a completey different world than we were back then and it kills me to think of back then and what could have been. It's just too hard, I don't do it too often because it is so hard. Needless to say I have had a really hard night. I am so thankful for prayer and for a loving Heavenly Father who knows me and knows everyone in my family and who comforts us and gives us what we need to make it through this.

When your child faces cancer, let alone a rare and highly malignant brain cancer, it is more than you can bear, without Jesus. A lot of people say that God will never give you more than you can handle. I know this is more than I can handle. However, I wonder if it could mean that He will give us what we need to handle that which alone we couldn't.My sister in law gave me a little tile decoration for my house that says "The Lord will shape the back to fit the burden placed upon it". I believe this is true and that there is no way i could do this alone. I am so thankful for all of you, for all your help, prayers, support, and love. Without you guys this would be much harder. I know God put you all in our life for a reason. God is good.


  1. I love you.
    I love that we got to see you guys for a minute today.
    I love your family.
    And, I love that we get to be friends. It's just really good being around you guys.

    It IS crazy that you are living life in a totally different world now. I can only imagine what it must have done to your heart looking through all those old photos.

    It makes me bawl just thinking of it.

    I have no words of advice or big Ra-ra-Raa's of encouragement----just sending my love to you.

    And, as always, sending our prayers to Heavenly Father for that little miracle named Jaylie and her amazing family that we are so lucky to know.

    Lots and lots of love.

  2. Jaylie looks so beautiful in this picture. It's still seems like a dream our sweet niece is battling cancer. I never could've imagined what she would be up against just a few short months ago when we celebrated Christmas together. Our heart aches to be so far away, and wish we could help lift your burdens more than we're able to. You have done incredible through all of this, and I believe Jaylie will beat this! We love her and your family so much. Just know through good and bad days you are loved:)

  3. So sorry you are going through this Kajsa, I have thought of you several times today, and have spent hours reading the blog since Katherine sent me your link months ago. I know it is so hard. Our little boy Joren has ALL (leukemia, most common type) and is in his 3rd year of treatment. You'd never know it now though, we only had 3 courses of the heavy duty stuff over the 1st 8 months. After that his hair grew back, his energy returned in full and he doesn't mind at all the weekly blood checks via his port, his monthly vincristine and 5 day course of dexamethasone (steroid), nor his nightly mercaptopurine, weekly methotrexate (tiny yellow pills we have to dissolve in liquid, and the yuckiest medicine) or his weekend antibiotics. It sounds like a lot to some but once you get through the first 8 months with ALL it is really smooth, we rarely get fevers and have to go in and stay for IV antibiotics now, but I know how much it wears on you. His 12 weekly lumbar puncture and chemo this last week really was tough for me (I'm pregnant with number 3 and couldn't eat as he had to fast, and of course you get extra emotional and less patient with the 4 hour wait). It really has a cumulative effect over time. We have a friend in Houston whose son had a wilms tumor and one kidney removed in march and just finished his chemo in time to start kindergarten. I don't know if it helps to know you are not alone going though this, there are so many of us experiencing it to different degrees, and I pray for you for the strength you need to get through it and for Jaylie's body the strength to fight it. The nice thing about the other children being younger is that they won't really remember that you weren't around as much as normal. They will just know they were surrounded by people that loved them the whole time. Anyway, i doubt you even remember meeting me at A&M but we send you all lots of love at this difficult time. xx Chris and Alisha Davis, Brooklyn & Joren