(James in early March)I know that Matthew posted about yesterday, but it's 4:00 in the morning and I can't sleep because my thoughts are taking over. I think I am still in shock. At some point I keep thinking that the shock is either going to wear off, or this whole thing is going to be just a nightmare and I'm going to wake up. Neither one of those have happened yet.
Yesterday started out being a good day. Dr. Sacco and his groupies came in early and told me that they were going to take the EVD out in the morning. He had about 10 groupies with him instead of his usual 2-3. They all follow him along like he's the Mother Duck and they are his ducklings, following him in a row wherever he goes. The other day I heard him pass our room in the hallway. He was saying to them, "Now let's go to the office and talk about what you have learned today." For some reason it cracks me up. Probably because he said it very kindly to them all while wearing one of his infamous suits. I call them Pimp suits. Because seriously, no one else could pull off these suits.
My friends Cathryn and Kristin stopped by to see Jamesie. They got to see him without all of his tubes and wiring for the first time! The nurse even said that he might even be able to put clothes on later in the day. I was so excited that I started looking through all the baby clothes that I had brought.
I thought that once the EVD was out, James would begin feeling so much better. That still hasn't happened. He starting throwing up, much like he did before he was diagnosed. Honestly, I panicked. After 3 brain surgeries, I thought that the vomiting had been taken care of. And then I got mad. I mean, could the poor kid just catch a break? Could he just have one day where he felt well?
They are watching the fluid around his brain. If it doesn't go down, they will have to put another drain in (I'm not sure whether it will be internal or external. I didn't even ask.).
When Dr. Klesse walked in, I was just expecting her to talk about the surgery. But when I saw her, I knew that it had to be a rhabdoid. I had started preparing myself that this was the most likely option. I thought that even if it wasn't one, it would be much better to be relieved that it wasn't. I do really like Dr. Klesse though. By the end of our almost hour long discussion, she was crying with us.
Like we've said along, we are going to be positive about this for James. But today it was hard to be positive. Today was a minute-by-minute kind of day. We had to sit and brainstorm what the positive was. Fortunately Matthew's dad, Jim, was still in town and came up with some good positives. I am so grateful that he was still in town. He is a calming presence, and we desperately needed him today.
When Dr. Klesse told us that his prognosis was 50-50, it was actually better than I had been thinking. If you google the prognosis on a rhabdoid, she said that most percentages will show you much lower. But that takes into account that there was no treatment 5 years ago, and we are going to be doing a very aggressive and progressive treatment. I am SO thankful that it is 2011 and we have a hope and a treatment plan. I can't imagine what families must have been going through several years ago. To be told that there is absolutely no treatment plan would be devastating.
It's going to be a long year. I think we will go through the stages of grief and sometimes we will cycle back through those stages. I think today I have been through all 5 stages and have ended up back at stage 1. I spent several hours today begging God to give the tumor to me instead. James doesn't deserve to have to go through this. But the truth is that no one does. No one gets cancer because they "deserve" to, no matter what they have done in their life.
Random things have upset me today. I know that he is going to lose his hair. I have known that for days now. I think I'm ok with that. Tonight I got to hold him on the couch for the first time in a long time. He snuggled up on my chest and laid his head in the little space that his head so perfectly fits. It's the spot where he normally naps (I know, bad parenting 101- I've never made him take naps in his crib. I almost always let him sleep on my chest. I don't regret that decision for one minute.). Parts of his head are shaved right now from the various incisions throughout his head. He has so many at this point, including a large, hook-shaped one in the back from his last surgery. The thing that made me start to bawl is that his head doesn't smell "normal" to me right now. We haven't been able to wash his hair in over a week. It's had several washes of anti-bacterial solution and iodine, but no baby shampoo. Oh how I miss that smell of freshly-washed Jamesie hair! I miss being able to wash his hair and comb it afterwards. I miss being able to give him a bath.
I miss that our typical songs and dances don't make him smile. James is such a happy, happy baby. I have this song that I sing to him when we do diaper changes. It's called "Baby legs" and its sung to the tune of "Baby love". It came about during the winter when the only time I got to see those adorable baby legs was when I would take off his tiny pants for a diaper change. He has this one tiny roll on each thigh- they are the only rolls on his whole body! Normally I sing the song and wiggle his legs in the air and Jamesie laughs and laughs about his baby legs. I so desperately want the baby legs laugh to come back.
I know we are in the best possible place for James, and under the care of terrific doctors. I know that God is the Great Healer, and I know that he can work a miracle through James. I believe that God is 100% in control of James' life, and he knows how all the puzzle pieces fit. I am thankful that on a day like today I don't have to be in control. I am thankful there is a treatment available. I am thankful that we live in Dallas, and therefore James will get to be at home in between his treatments and in his room that he loves. I am so thankful for my church family. I need to write an entire blog about how amazing they have been. I could probably fill an entire book at this point actually. I am thankful for friends that give me faith when I doubt. I am thankful for family that turn upside down their lives to support us.
I know a lot of you keep telling me how strong I am- let me tell you that God has put amazing people in my life to journey with me. I am only strong because I have thousands of you lifting me up. There is nothing in this strength that comes from me. All glory belongs to God because he has truly blessed me with everything that I need. Everytime I needed to hear something one of you, sweet friends, has sent me an email, text, shown up at the hospital, phone call and said exactly what I needed to hear. I don't believe that it is a coincidence.
So I am preparing for the roller coaster ride of a journey we are about to embark on. I know we will have highs and lows. I will rejoice in the highs and the lows, because I am thankful that we have a treatment plan and that we have been given the opportunity to fight. That tumor just better watch out because he was one angry Momma coming after him!
Love you all.