Sorry it's been a week since I updated...Last week seemed to go by a little quicker as we had Aunt Lindsay visiting and helping us out. Avery's treatment went well, although she was not very happy about having to sit behind a metal screen with Lindsay and talk to me. Once the injection is done, it is no longer safe for me to be close to her so a metal wall was brought into the room to divide us. All in all, we tried to keep contact to a minimum until Friday which meant a lot of seeing but not doing for me. Tough on both Avery and I, especially when she was tired and crabby. Lindsay was a trooper though and managed to distract her most of the time.
Jeremy is with her this week and it has been a tough week for him. I left on Sunday evening and he and Avery have been alone, other than an afternoon visit with Scott yesterday. I think daddy is running out of things to do in that hotel room. Today he took her to the Gray's Pappaya place on the west side of the park. This is the famous hot dog joint that you see in a lot of movies. She of course was not interested in the hot dog at all, but the banana smoothie was a hit. Tonight I'm sure dad has her watching the American Idol finale.
I leave again to go back to NYC on Saturday afternoon. Jeremy will return to KC on Sunday and then Nana arrives on Monday night to help us pack up and make it through the last week. Treatment will be on Wednesday instead next week due to the holidays -- cause of course hospitals are closed on holidays too....Seriously? It's almost as if they think bad things only happen to people M-F, 8-5. That means we can return home on Friday afternoon. It will be a long week I'm sure for the 2 of us as we pack up and await that flight.
We are very anxious to come home, but at the same time nervous about what that means. This is it. The plan is at an end. Now its a game of wait and see. We've never been to this point - we relapsed before we made it this far last fall. Now the scariness of what could be looms very close and very real in front of our minds. If we aren't working to make her better we feel like we aren't doing anything and that scares the crap out of us. Telling ourselves that its in the best hands possible, God's, makes me feel better for a few minutes and then makes me want to cry the next. As a matter of fact I am bawling right now and I don't think I can keep writing.... so I'm not going to.
Everyone has been incredible these last 7 weeks as we struggled to make it through this stage. We appreciate all of you so much whether we have gotten the chance to say it or not. I hope you all know that. Why this time was so much harder for us than the 6 months in Memphis and Jacksonville last year, we aren't sure, but thank you to the ones that brought food, made us dinner, took care of the lawn, took care of the dogs, kept us occupied when home, sent care packages, and prayed for us through it all.
We pray that everyone is safe and sound tonight - and that family and friends have all been accounted for here in the midwest. It's been a crazy couple of days. Another one of those times when you just got to kiss those kids and tell them you love them...