Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Wednesday, July 20, 2011

Quick Update

Day -6 has ended, and Emily is sleeping and I was able to work some and now I just wanted to give a super quick update as I am exhausted.

Emily complained her stomach hurt and then got sick once around dinner time. This was around the same time that she was getting Zofran. Currently the Zofran is every 8 hours and we had requested it get changed to every 6 hours (this is what we did during Rounds 1 through 6) and the change hasn't been made as of yet. So this will be on our list to talk to the doctor about when he comes in today.

Emily has been very about mommy while we are here. Prior to this starting she was all a daddy's girl and once this started, she wanted me here, and would get upset if we asked her if daddy could stay the night here. The past couple of nights when I lay down with her she would rub my arm and keep saying mommy I love you, Mommy I love you. She is such a sweet little girl, don't understand why she has to endure this, but dad and I both know we are doing the right thing. I did see if I was able to sleep with her because Emily wouldn't take that very well and Dr. Gowda gave me the permission to do so (and said other parents do this as well). Tonight I got a cot put into the room so that I could do my work on the cot and update caringbridge and she got very upset thinking that I was not going to be sleeping with her and I reassured her I was going to be sleeping with her.

The girls were able to visit for a little bit today, which was great to see them and Emily definitly enjoyed seeing them. Jessie, Emily ad Brianna are all amazing kids and we hate that Emily has to go through this, but also that their sisters have to go through it in a different aspect. This hospital stay of course if very different from others, but since after Thursday the girls will not be able to visit, I will be leaving in the evening when dad comes up and spending time with the girls and then coming back to stay with Emily. I won't leave this week while Emily is getting chemo, very particular about it and watching what is going on.

Tonight we received a visit from very nice young lady, by the name of Erin, whom we had never met until tonight, and she knows a good friend of mine that I used to work with through my previous job. She came by and brought a big smile to Emily with some lights to decorate the room (and Emily was excited because they looked like camping lights) and a arts and craft box that was beautiful decorated. Erin thank you so much to you and Roger for your kindness, it really means a lot to us.

Tomorrow about 1130, Emily has the teacher coming to visit and do some work with her, hopefully Emily will feel up to it.

Again just a quick update, for the finish of Day -6, I will try to do a better job at updating everyone daily to let you know how Emily. Thank you again for all of your thoughts and prayers, they mean so much to us.

1 comment:

  1. Robert PuchalskiJuly 20, 2011 4:24 AM

    Thank you for the update on Emily, Shannon. These updates make me feel like I have a more personal friendship with you and your daughter. I continue to pray for all of you each night and day. You are in my thoughts always. God bless you and Emily.