Ok, I'm sorry for slacking on the blog the last 3 weeks!! I meant to update it on several occasions but I am a huge procrastinator!! let me start off by saying we had a GreAt 3 weeks off! Gracie was happy and active much of the time. she had TPN through the central line every night by yours truly. Chloe was my little assistant with getting me all the tubes etc. she says she wants to be a doctor. sometimes Gracie says she wants to be a nurse but usually she says she just wants to be a mom and cook fer her children. She's so cute. one day I asked her if she was going to have boys or girls. She said " how do I know!?" lol I said sometimes we can adopt children and say if we want a boy or a girl. She seemed ok with that. It's just a start to future conversations...it's enough for now..
we were so blessed to have Easter at home again. Gracie has been able to be home for every holiday since diagnosis, which is pretty huge considering all the setbacks she had. There are so many kids that spend the holidays in the hospital and we definitely recognize this. we had a great Easter. I will post pics when I get back home.
we got to Ft worth last night and started round 5 this morning which is the ch14.18 and GMCSF shots. The nurse called in another nurse to hold Gracie still for the shot. How quickly they forget she is a rockstar!!! I said it wasn't necessary and she would hold still, and of course she did. :) the Day went pretty well. She started having pain around 1 o'clock as usual and got the nurse boluses of fentenyl about every 2 hours after that for a total of 4 times. She also puked once but other than that she was fairly happy and had a good day. the ch14.18 ran at 10 ml/hr for 10 hours, so now she can hopefully have a restful night. We have 3 more days and go home Friday!!! this is the last hospital course!!!!! We can hardly believe it!!! After this she has 2 weeks of accutane at home and then 2 more weeks off and 2 last weeks of accutane at home. we will then come back for all the follow up scans etc at the end of June. we will leave her central line in until the scans and continue with TPN till then. she gained 4 lbs on the TPN these last 3 weeks and her little legs are starting to look like legs again. :) she is gaining strength as well. Thank you so much for your prayers. Please pray for her appetite to return so that she will be able to start Kindergaten in the fall!!!! Xoxoxo