Monday, January 31, 2011

We're gettin' outta here!


So, Brooklyn did fine with new chemo! We are packing up, flushing her tubes, practicing changing the dressing for her catheter and when to give her which medications. When we go over everything, my head feels a little like it's going to explode. There is so much information and so many things they are watching to make sure her body is handling everything okay. We have an awesome calendar that charts everything out for us that will help us immensely. I just told Mike that I feel so responsible for her, more than ever before, because we are in charge of taking care of her treatment on a daily basis. He (like he often does) just made me laugh - he said, "They always say God won't give you more than you can handle, so apparently four kids & our normal busy life wasn't enough." God must think pretty highly of us if He thinks we can handle this too! :)

Hoping to head home

We are having a good morning today and I am feeling happier. :)  Brooklyn is loving eating all the frosting off the cinnamon roll her dad just brought her! She just had an ekg and will be hooked up soon to receive her third kind of chemo. If she has a fine reaction to it, we will be able to go home today. Yea! She slept for almost 12 hours last night so woke up ready to go! We made some laps in the hall and were bummed to find that we were ready to play before the play room was even open! As she was getting stickers put all over her for her ekg I was thinking that it is so amazing that she hasn't asked us once why all of this is happening or why she has to do something. She is just doing whatever the doctors/nurses/we tell her because she trusts us, and I know that that is the kind of trust we need to have in God. Blind, unquestioning, fully relying on and trusting in Him. He is our provider and although we don't always know why things are happening, I know that His plan for us is right and good.

Sunday, January 30, 2011

It will be otay

Brooklyn has had a good day again today, walking all around, riding in the wagon, wanting to play in the play room, but for some reason I am having a harder day. I know that we are going to be able to do this and that God will help us through, but I have been sad all afternoon. I think I am just sad to think that she will have to go through all of this and that our lives will change so much. I know the idea is that we should keep things as "normal" as possible, but we are going to have to be so much more cautious of germs & infections so that she doesn't get sick. We won't be able to do the same things because her immune system is so much weaker because of the Leukemia. It is all okay because we know that getting her through this and keeping her healthy is the most important thing, it will just be an adjustment for awhile. I was sad in our room today and Brooklyn said, "What's wrong Mommy?" and I said, "I just don't want you to be sick." She hugged me and said, "It will be otay. Don't be sad." I know God is helping us through these times by making her so strong. She is getting another blood transfusion again, but I'm sure we will be up running around the halls soon like we were last night. I never knew walking laps around a hospital floor could make me so happy. :)

Saturday, January 29, 2011

Superhero Brooklyn

It is amazing to me the way that Brooklyn is able to bounce back and be such a happy little girl after going through so much this week. We had a great day today! She hasn't been up and around since her surgery on Thursday morning, but getting up and walking is something that she needs to do before we are able to leave. I told her that we needed to try just a little bit today and although she was hesitant at first (because it still kind of hurt), she just took off. We went to visit our old roommate and then went to play in the playroom for awhile. We also had our first sponge bath today which was good & made her feel (and smell) better. She has to take all of these medications that taste terrible and even though she doesn't want to, she will grab them and squirt them into her mouth by herself. Her attitude and strength are so inspiring. Daddy & Brooklyn & I just did about six laps around the halls. She didn't want to stop and we didn't want her to stop. At one point she wasn't even holding our hands and she was jumping. She said "Me like a horsie" because we were following her with her IV cord that is attached to her catheter. She brings us so much joy and we are so thankful for every day.

What a difference sleep makes!

Brooklyn slept very well last night and woke up happy this morning! She has already been laughing and joking, playing peek-a-boo in her sheets with our nurses and drums on her (just in case I need to throw up) bucket. She has had some pancakes and apple juice and did a great job with her Dexamethasone this morning. That is the oral steroid that she has to take twice a day that everyone has said tastes just terrible. She is such trooper! We are going to try to take a sponge bath later and do some walking. It is a good start to our Saturday! :)

Friday, January 28, 2011

The road to recovery

Brooklyn didn't feel great today. She is really sore in her back where she had the spinal tap and the bone marrow biopsy. She wanted to constantly be held or laying on one of us. We did go down to the play room a couple times and played with Mr. Potato Head and played the piano and sang with the music therapist. She also liked petting a beautiful therapy dog that came in to visit the kids this morning. We took a ride around the floor in a wagon, but she mostly liked being held. She had her first round of Chemo tonight - one that went into her catheter and one was an oral medication. So far she has had a fine reaction to both & is sleeping soundly right now. The first month of treatment is pretty intensive, with daily steroids taken at home, weekly outpatient steroids at the clinic here at UC Davis and 2 or 3 more spinal taps. We haven't received instruction on treatment after that, but she will be receiving some form of chemo over the next 2+ years. We got our own room today so that is really nice, but we miss our old roommate, Meghan. She was so sweet & made notes and clay figures for Brooklyn & her family gave Brookie a little vet kit that she loves playing with. We feel very blessed to be in such good hands here and knowing so many of you are praying and keeping us in your thoughts.

I will protect you

So, the afternoon of the surgery proved a little rougher. She was happy & fine coming out of surgery, eating and drinking, but a few hours later, she started throwing up and got a fever. The doctors gave her some medicine to help with her discomfort b/c she is sore at her surgery sites, as well as an antibiotic because of the fever. They are very precautionary to fight off infection since her body isn't working exactly as it should be right now. It is hard to see her feeling bad since she has been up & playing around the last few days. Even though she is feeling yucky, she is still the sweetest little thing ever. She is constantly wanting mom & dad to lay with her and she is giving us hugs & kisses and telling us she loves us sooo much. She also has told each of us she will "protet" (protect) us if there happens to be a scary part in a cartoon or movie she is watching. She is definitely the brave one.

Thursday, January 27, 2011

Surgery is done!

Brooklyn had surgery this morning and everything went well. She now has a Broviak tube in her chest where she will be able to have blood taken and receive her chemo. She did fine going into the operating room, she got some medicine to sedate her and it made her giggle as they were wheeling her away, which helped us feel better for sure. She has been eating and drinking great since the surgery and the doctor should come in soon with the results of the bone marrow biopsy and what path we will take for her care. Everyone at the hospital has been really nice and love to see her happy smile.

January 26th


It looks like Brooklyn will have a bone marrow biopsy, a spinal tap, and a chest catheter put in tomorrow, Thursday. The biopsy will test to see what type of Leukemia is in her bone marrow, which will help doctors determine the course of action for treating Brooklyn. The chest catheter will allow doctors and nurses to take blood and give Brooklyn medicines and chemo without having to "poke" her with needles.  We are hopeful that we will know the results from these procedures shortly after the surgery.  Most likely, Brooklyn will start chemo as soon as Friday, which means she will be in the hospital until at least Monday.