Sunday, December 12, 2010

My dexamethasone monster

Protocol.  28 days and we hope for remission.
We're on day 22, 6 days left and I have no idea what the next step will detail, other than it's a 6 1/2 month stretch and it's called consolidation.

This thursday she will have her 3rd lumbar puncture, and she will have cytarabine fed into her spinal fluid, and again they will pull more bone marrow. She handles this better than I do, as a matter of fact it takes every ounce of energy I have to stay in place and be strong. Sometimes I just feel like I'm in a giant vaccum, and all the air is sucked out of the room.

I see brinley change everyday, not just physically, but her personality has shifted. Her bubbley, whimsical manner has slipped away and left me with a little girl struggling. We have our good days, and we have our bad days, sometimes its a combination of the two.  Most of the time she just sleeps, and if she's not sleeping, she's eating, all thanks to the dexamethasone. I keep having to remind myself that she's not going to get better in a week, that this is going to be a long fight for all of us and I have to stay positive and strong.  Most of the time I'm good with that, other times I'm worried about relapse, or what if this doesn't work...

I know. Everyone says, "you can't think about that" but I do, I constantly worry about the unknown, and I think it's perfectly normal that I do so.

On top of this all, there is christmas in 2 weeks.  I struggle with this more than I'd like to admit because I'm just not there, I can't fathom celebrating, shopping, decorating, right now it just seems silly.  But I have two children who are SUPER excited and for them I'll fake it until I make it.  I'll smile and get just as excited as they are and secretly hope it's all over soon.  The single thought that keeps me going is knowly they will have an amazing christmas and they will be excited about the festivities. I will do everything in my power to make this christmas memorable for them. 

Anywho, here is a before and after pic of my monkey...

                         this was in the summer for great Gramma's 90th

this was taken a few days ago, steroids make her super puffy


  1. a heart wrenching account so eloquently told~ thank you for sharing, your family will be in my prayers tonight!!

  2. 6 days to go - wow. Hang in there, you are doing such an amazing job, and those puffy cheeks - oh my, they were called "racoon cheeks" at Children's Hospital in Vancouver, I will have to find a picture of Jenni for you. She sure had them too!

    Keep smiling Morgan, you can do it.....