Update for Moo Moo

Macey just finished her monthly dose of chemo.  We had to lower her dosage because her blood counts were a little low from the last round.  She still seems to tolerate it pretty well.  It does upset her stomach and makes her very tired.  Within a few days after her treatment however she starts getting more upbeat. 

Mom has been working with her everyday on her exercises trying to get her right side stronger.  This would be such an easier thing for Macey and everyone to deal with if this *$#@ tumor hadn't messed up her ability to walk.  Macey wants so bad to be able to get around or just go somewhere if she feels like it.  Not so easy right now.  Until we can get her strong enough to walk on her own it's going to be a challenge.  So we'll just press on with the physical therapy and hope and pray that her nerves repair and she starts getting some more feeling in her leg.  She has made improvements though, still just not as fast as we were hoping for.

Macey had been taking such a low dose of Vimpat (for seizures) that we have felt all along that she doesn't need the drug.  Besides it making her feel like crap God only knows what using it for long periods could do to her.  The only seizure Macey ever had was the one right after her surger/biopsy.  Of course her brain would have been agitated.  Her neuro surgeon said that he normally likes to give a "pass" or "get out of jail free" card if you will when it comes to making a patient take seizure meds if they've only had one seizure.  The Huntsman Center preferred that she stay on the drug but Macey and her parents felt it wasn't necessary so we slowly lowered her dosage and took a few weeks to drop it down to nothing.  She has been off the medication now for a week and is doing wonderful.  She's not as shakey, doesn't feel dizzy anymore and said the "halos" she was seeing around lights are gone.  I think we made a good choice.  We have other drugs on standby if she starts feeling like she did the one time she had a seizure.  If that happens, we'll probably have her put back on the meds, but until then, she's off. 

For the most part Macey is doing fine.  She is getting very bored with the daily routines and not being able to get around but really is so amazingly strong.  She has her moments and she breaks down and who can blame her.  She feels like she is stuck in a nightmare (which she is) and just wants to get better.  We continue to encourage her, tell her she can beat this thing and shower her with affection and love.

We'll update more as things change.  It's been awhile since I posted but things were pretty stable and there hasn't been a lot to talk about.  Until then, keep Macey in your thoughts and prayers.  Thank you.