She is still pretty exhausted, but I can tell a difference from yesterday. She is more with it and more responsive. She has been requesting mommy or grammy to hold her in the chair. She has something against the bed (and Scott at this point)..I am guessing from the traumatic 1st night has to do with that. It feels good to have to first day out of the way. The 1st dose of chemo was given and the big surgery in the OR is done. She is still really sore and doesn't like to move much. Going potty in the bathroom is a big deal and a lot of work. She is being such a trooper. I wish I could explain this better so she would understand. She is still jumping/terrified when the door to the room opens. Anytime a nurse comes in she asks me to cover her eyes. It just about breaks my heart when give her medicine, take her vitals, or check the bandages...she cries and says," mommy, cover my eyes and hold my hand". I cry just about every time. I keep thinking that I can't handle this, but then I know I have to. I don't have another option.
We have been lucky to have so much family support and help. Treena has been keeping Slade and bringing him to me at the hospital. I have mixed emotions because I feel like I am abandoning him. I know he is taken care of, but I want to be with both. I am glad he is at an age that he doesn't quite understand and is happy to be with anyone that will give him attention.
Being at PCMC is surreal. Especially today now that all of the workers are here. The music, volunteers and people out and about. Still feels like a dream....never thought in a million years that this was something that I would go through...or more so my baby girl. I wish I could take this from her SO bad. She shouldn't have to do this.
The moms that are here with their kids have been so sweet and it is so nice to talk to them. They know and understand. They have been there. What a great group of ladies. I hate that I get to part of their "group" but so grateful that they are here to relate to. Hearing their stories makes me feel...better...or maybe just someone to empathize with. I actually cried my eyes out in the arms of one of the moms... literally 5 seconds after I met her. She was so sweet to just hold me and say that she understood. It's a whole different world...the lingo, procedures, protocol..something we are going to become too familiar with. I keep hearing that it becomes easier which is great to hear. However, at times I feel like it's not fair that this has to become the "drill" for us. That it only gets easier because she has to endure it all so frequently. I don't think it's easier...you just get used to it.
It's only been 2 1/2 days. I am still struggling. I have my moments...strong and weak. Happy and sad. I am trying to hold it together. Grateful to have the support. Trying to stay positive. Love my baby girl more than ever. She is so precious and I want her to keep fighting. She is doing great.
Hoping for a good day. People should be coming by today (social workers, financial people, pharmacy, docs, nurses). They are going to make sure that we are able to handle it all once we get home. Day 4 will be a big day, another dose of chemo. If she handles well, we will be coming home on Wed night or Thur morning. We will come back up the following Tue and once a week for the entire month. Day 28 or 29 will be a big day. A day of answers and a telling of what is to come. I am hoping that the prayers will help things go our way. Sounds kind of selfish, but I want this to go as smooth as possible.