Yesterday we arrived at the hospital and it was just so so good to see Denny and Kayla. For whatever reason it felt like one night was 2 or 3 with out them. Oh how we long to all be home together again.
When it was time for some pain meds we realized that Kayla's IV was beginning to fail. She was in so much pain so we decided it was time to pull that last IV out. So, that was good. One less tube! Denny told me that the social worker came in and said that the results were in for the pathology test. We would be meeting in a private room at 4:00. You can imagine how our stomachs ached and our hearts pounded for the remaining few hours. I just kept thinking, ignorance is sometimes bliss. Sometimes not knowing... and thinking this is where we are now and this is all it is can be comforting. But then you know that knowledge is power. That without knowing, we don't know what our future entails. Denny and I went outside and had a loving talk about how we were both feeling and that no matter what the docs said, we love each other and would be there to fight for kayla. We prayed and cried and just waited. Donna stayed with Kayla when the social worker came in at about 3:55 to get us. We walked into this freezing cold private room which was set up like a conference room. Just a plastic hospital pitcher and some disposable cups for us to drink water from were on the table. We sat down and the conversation was long and annoying as we waited for the oncologist to arrive.
Finally she did. She sat down and took a deep breath and I could just read it all over her face. The "someone shot your dog" expression. I composed myself for a lot of it at first. I wanted to take very accurate and clear notes and be able to understand everything they were telling us. She confirmed what the doctor had thought when he spoke with us after surgery on Thursday. She not only had medullablastoma, but a very aggressive form called Anaplastic Medulloblastoma. Now, before you go and google it, please please please do NOT tell us what you have heard or what you have read. We got the very raw and real facts from the oncologist. If you want to google it, go ahead. Just please keep it to yourselves. Kayla will come home to rest in a few days for only a few weeks. Then, just as she starts to recover she will begin her treatments. They will be aggressive. Over all we are looking at about 8-10 months before her exhausted body will get a chance to rest. Maybe more. I am terrified. I can't imagine how she will do during this. Each child is different. So, be on the look out for pretty scarfs and hats. It's going to be a chilly winter for our baby girl.
As far as me working? I have no idea how and when I will be able to. Once we get a real clear schedule maybe I can work a little? They aren't sure if she will be able to go to school or not. We are about to start cold and flu season. Her immune system will not be able to tolerate getting even a cold. I had the idea last night that maybe somehow I could get a computer for Kayla's class room and then at certain times of day, we could skype in and listen to the lessons. I don't know if that is even possible yet. I just know she is going to miss her friends so much! It breaks my heart. This is the most pain Denny and I have felt in our whole lives. It's any parents worst night mare. I keep waiting for someone to yell out, just kidding!!!! And no one does.
I am already feeling my soul harden and my smile start to diminish. I am hoping that is just today. For some reason, it's always like this when I'm away from Kayla. Denny too. As soon as we are with her, it's so much better.
Welcome to 7 Long:
Her new room is beautiful! It's purple!!! Her favorite color. The beds are big and nice. There are small flat screen tv's at the foot of each bed. They even have a wii connected to each one. It's a shared room with one other person, but for now, the bed is empty next to her. The bathroom is in their room! No more walking the halls to go shower or use the potty. I have a feeling we will be making some incredible friends here. There are kids walking the halls with those beautiful shiny heads. There is even a coffee pot for parents. It's a beautiful floor. It is so quiet and clean. We are trying to see all the positive sides of this new second home. We aren't sure when they will discharge us so that we can spend some very important time at home recovering and working on her strength yet, but we hope it's soon. Today the doctor cleared me to give Kayla a real shower and even gently wash her hair. I am terrified of that too. Kayla was sad about not being home for Thanksgiving, but I promised her that what ever day we get home, we will celebrate it!
Ok, that is really all I can share at the moment. I am having a hard time today.
I just thought of one really important thing though. Kayla has only known the really sad things about Cancer. She knows her dog died of it. She knows Denny's aunt Cece died of it. She knows my dad is so sick he can't go anywhere from it (for years now!). I want to protect her until we can teach her more about it before anyone uses that word in front of her. For now, she knows that Dr. Gupta got the whole bump out. When she is home we will tell her that they have more things they need to do to keep the bump away. That is all she needs to understand for now. So, please, if you happen to be around her, please please don't use the word "cancer". I can't bare her going through the thoughts that would follow that word.