We went back to the doctor on Friday for Madeleine’s labs and a clinic visit with Dahlia, her ARNP.
First, her labs. They weren’t as great as we would think they would be this close to chemo again. Her white blood cells and platelets are coming back into the range they want to see them at, however her red blood cell counts dropped a bit. So we have labs scheduled for Monday again and blood will be in-house at that time so that if she needs a transfusion, she can get it. I sure hope not, but I’m starting to think she’ll need a transfusion of some type before all of this is over. We also have an appointment for Tuesday for our pre-admit appointment with Dr. Park and will be checking in to the hospital on Wednesday. We’ll just be living at the hospital this week!
I will update about her movement later, when I have time to upload a little video. But I am still seeing progress – although she is not rolling over anymore after losing her movement again a couple of weeks ago – we are still seeing progress. So I remain cautiously encouraged.
As for the steroid, we are still tapering off of it. I spoke to Cori about what the neurologist said on Tuesday and she said that they have all talked and felt that he was incorrect. That he didn’t know a) how long she’d been on the steroid b) that she already did one long/slow taper and that they didn’t think, given where her tumor still is, that the chemo next week will cause swelling which would cause more damage. So at this point I have to put my trust in them and watch her like a hawk in case her symptoms get worse.
The good news is, with the taper she is much improved! Her mood is fantastic and she’s only waking up 3 or so times a night, instead of 6-7. She’s also eating a fair bit less, which is really nice. I don’t have to race downstairs to feed her right after she wakes up anymore.
However, as we expected, she is having pain in her legs while tapering off the steroid. This is a side effect that we knew could happen, but it causes her to not enjoy things like diaper changes, physical therapy leg bicycling and anything which requires I move her legs. 😦
She was 21lbs 14oz when we were at the clinic on Friday, which is another 5 oz since her visit earlier in the week. As she is fully off the steroids, she should start losing that weight, which will be great. I hate to see how swollen and overly-chubby she is right now. I imagine that’s part of the reason she’s having a hard time rolling over and moving, in general.
We’ve been experimenting more with food, and she is a huge fan of real people food, rather than adult food. This week she’s had ravioli, tortellini, bananas, green beans, yogurt and cereal. She loves and adores italian food. In fact, this evening when I was feeding her yogurt, the tortellini finished cooking and when she saw it she immediately burst into tears until I cut up some pieces to give to her. LOL! Such the drama queen. So funny!
I think that’s it for now! Hope everyone has a nice 3 day weekend.