Saturday, January 28, 2012

January 28th, 2012

Every day at around 4pm this man comes out from behind his desk to go and feed the squirrels. It's hysterical! He is like Snow White out there!!! He brings out this huge white plastic bag from the trunk of his car and throws what looks like chunks of bread out. I am not exaggerating when I say that about 20 squirrels come running out of everywhere and get within about a foot or two of him. It's the sweetest thing. You can tell this has been a tradition of his since way before we ever got here. 

Today I went to a couple of stores to gather boxes for when we are ready to pack up and get our things into storage. I drove around some streets that I hadn't had a chance to familiarize myself with yet. There are so many places we have yet to explore here. I can tell you one thing, the best gift I have gotten is this rental car!!! This is not a town you can easily (or safely) just walk to places in. I am not sure yet what my car situation will be for the next brutally long leg of this. So, I decided I better take advantage of having a ride that will take me anywhere and stocked up on cleaning supplies, garbage bags and other necessities for when we return. They will be safely stored here underneath Target House 2. 

While I organized and cleaned here, Den and the kids went over to the art room for a lesson. It was nice to have some peace and quiet so I could gather my thoughts and build my strength. The past week has been particularly tough for me emotionally. I had a hard time staying positive and found myself in a state of shock and panic over the uncertainty of this whole situation's future outcome.  I think the hardest thing on any of us is that there are no guarantees about the long term.  If a person going through treatment could be guaranteed that after all is said and done that you would be free of worry, it would be so easy! You would breeze through the blisters, mouth sores, muscle aches, sedations, surgeries, nausea, and all of the other horrific side effects with ease. You would know that there is a reason for all of this. Unfortunately, we won't ever know. It's something that keeps me up at night. So, that is why I have been down. Shear fear. I do know that my little girl will keep fighting. We will all keep fighting right along side of her. I will pray and fight for a CURE. We are realizing why the search for a cure is even more important then finding what causes it. There are just too many unknown factors to ever pinpoint it. What we need is a cure. What we need is funding for research... pediatric research especially. 

Here is a picture of Kayla and Miss Ashley from OT. One of our favorites here at St. Jude. She is determined to find something to keep working on with Kayla so we can come and see her lots when we come back. Her neck is doing fantastic, but we will find something! ;)

Kayla is holding up their latest art project. Melting plastic beads to make a replica of meow meow. It was a good thing Meow only has 3 legs... they ran out of white plastic beads! See? Sometimes even strange things are for a reason.

For now, I am going to focus on the fact that soon we will all be home on our much needed break. I get to drive up my hill. Walk down my steps. Flop onto my own bed. And just cry into my own tissues if I need to! Tonight when you lay down on your own beds thank God that you can. Then say a prayer for those of us who wish we could. Just take a second to remind yourself how lucky you are :) 

 Fishing at the Children's Museum of Memphis

Such a cool place!

Tonight, Kayla and I met a little girl, Angel (she is 10) and her mom. They are from Mobile, Alabama. They have been here since May and will most likely be here through the summer. SO sweet. Kayla and Angel had fun playing on the computer together. We might get together for Pizza tomorrow night. Kayla and Angel's eyes lit up! They can motivate each other to eat. Angel is having the same struggle with her appetite.  


  1. That museum looks like fun. It reminds me of our children's museum. I think you inspired me to return there asap!! All will be okay, and work out in its own way. I can't promise you are even know how it will work out, or in which way. I am not in your shoes, for what you are going through. But I can deff. relate to uncertainties in life. Life can be so scarey, never knowing what can happen. Perhaps I worry more than I should about bad things. But I just know that God is a great person to let it all out to! I think its great Kayla is making friends, and that you can have other mom's to vent with. You need that support. Perhaps they can give you strength/hope when you have none. Cause there are always those days, when we need someone to hold us up. That is not being weak, its being human. Esp for what you are going through. Try and hang in there, and stay as positive as you can (it won't always be easy, and at times, you won't be at all. That is normal for what you are dealing with). Soon you will be home, and can get some down time to reload as a family. You are making a lot of progress!! Think how long you guys have already made it. Try to not think about the what ifs, and all that. Life is too short, and everything is uncertain. It will get better! Love and prayers for you all!!!!!

  2. Oh, Annie. I can only imagine how tough this is and how it must wear on you all. I'm really glad you're sharing your thoughts and feelings with us. No advice to give - just hugs, love and support.

    xoxo Allie, Jeff and Evan

  3. Annie - you are doing such a great job. You're doing everything right. It is ok to feel down some days. You need that to build energy for the tougher days. You are so strong for enduring this and even stronger for expressing your feelings about it. Your honesty is what will help you get through this. Be sad when you need to and don't feel guilty when you have moments of joy. Kayla is so lucky to have you as a mom.

    We're all thinking about you!!! xoxo


  5. Annie,
    Your words are my thoughts. It is so nice to not be alone in this. We are going to have those bad days but that is ok. Being home will be wonderful! Enjoy and cherish it and we will have each other to lean on when we are back at St. Jude's.
    Talk to you soon!

  6. We are so sorry you all have to go thru this. You and Denny are such strong and amazing parents! Kayla is so lucky to have you by her side. We are also by your side in spirit;). Love and hugs