I took Abby to church today, she made it through the first 30 minute but then was getting a bit tired. She had to wear a mask while we were around people, since her counts are still low, and she wasn’t real excited about how it blocked her from smelling her “dee dee” (blanket) and kept her from sucking on her fingers, but it worked and it was nice to get out. One of the reasons that we braved the germ infested world of church was that Anna has a nasty cough and fever anyway, so I figured she’d probably be better off getting out of the house. Anyway, we had fun and it was good to see everyone.
Speaking of tired, I’m tired. This gig is kind of hard, good and worth it but hard. I’m both excited and anxious for tomorrow’s appointment. Excited that she doesn’t have to get chemo again till next week, excited that she will be off the moody prednisone pill for a while and excited that we may get to see more of the little girl that we remember. Doctor Smith, thinks that the leg weakness, excessive hunger, and moodiness will go away once she is off this, and with out chemo either, we may just get out daughter back… But that is also where I get anxious. Anxious about another early morning at the hospital with a hungry girl that hasn’t eaten for 16 hours, anxious about whether or not she really will get less moody when off the meds and a couple other worries. I think that I will stop worrying though, and just hope for the best.
We have really seen some improvements in the last week and on some days, other than walking, she seems pretty normal. I just have a real desire to go out and play with her again, go to the park, have her walk next to me with her whole hand wrapped around my index finger. I’d love to have her want to “hop on Pop” as she says, again when I get home from work. Those times will come, I know they will, I just miss them I guess.
Right now she is sitting next to me eating string cheese, crackers and noodles, her new favorite combo. She’s also been saying that she wants steak, something about
On another note, Abby is now signed up as an official honoree of the Leukemia and Lymphoma Society for the Team in Training race that I talked about in a previous post. I’ll try to post a link on Tuesday to a website with some photos that participants can use if they want for their support letters. And for everyone else out their that would like a photo of her smile that can light up a room for your desktop, fridge, or encase of a power outage.
We’ll probably know if she is in remission from the tests tomorrow by late Tuesday or early Wednesday. We’ll post them as soon as we know. 95% of kids are in remission by then and Dr. Smith thinks that she will be one of them base on earlier test.
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