Monday, February 21, 2011

Her frustration, my heartache

47 - chemo doses/treatments
10 - anesthetics

Wednesday will be the 10th time I have had to hold my daughters hand,  and kiss her cheek as she slips under anesthetic for another surgery.  I doesn't get any easier each time I watch her body go limp and they rush me out the door so they can get the procedure done and move on to the next child in waiting.  I'm still finding new ways to cope with the fear, anger and the sadness.  I've sat more hours in a waiting room that I'd like to recall, and I've absorbed more information that I ever gave myself credit for.  In the beginning, I said there was no way I would be able to remember blood counts, temperatures, and medication doses off the top of my head without having it written down. Now I am a vault of cancer knowledge and the vault is only getting larger. 

Friday was our 4th month into treatment.  4 down, 27 (ish) left.  I can't wait for the day when Brinley is off treatment.  Her strength is slipping away, and when I say strength I'm not referring to her will power.  Her legs are the biggest hurdle, and now her hands don't grip quite as well as they did before, she drops a lot of objects because her hands don't work as well as they use to.  My biggest heartache comes from her frustration with all of this.  She gets upset and angry that she can't do the things she use to, and she doesn't quite understand why.  Brinley understands that she is sick, she understands that the countless "big sleeps" and needle pokes are to help her get better, but she has a hard time understand that the inability to function normally stems from her cancer treatments.  I try to explain it to her but there is always a challenge breaking down cancer to a 4 year old.

losing her hair in the back
Saturday was my first day of witnessing a significant hair loss while bathing her.  She was complaining how itchy her head was, so I figured it needed a good scrub and every time I pulled my hand away there was more soap and hair stuck to it.  She doesn't seem to care, she knows it's coming, but I know once she's bald it's going to really effect her. Part of me wishes we could rip the band aid off and get it done and over with so we can move on, and then theres part of me that hopes maybe it won't all fall out...

I'm starting to notice that Brinley is having longer recovery times after chemo.  As each dose goes up 50mg, her recovery is a few days longer.  This time it was a week, Friday to Friday, but I was thrilled to see her playing again on Friday, she even got dressed!

Friday, coloring in the sun, wearing her "Brinley bracelet"

The Brinley bracelet


  1. WOW!! All these changes!! On a postive note, she is responding exactly as predicted so you know she's on the right tract. I know it doesn't ease the pain or heartache, but stay strong and keep postive!! Have faith and believe she WILL get better!! My love and prayers are with you all!!

  2. It must so confusing to tell a child she has to go thru chemo to get better, but each time she has it, she feels do you explain that that
    is what has to happen, and then one day she will find she feels a bit better
    and so on to where she can dance again. So very tough for you all, and especially for Mum who takes the brunt of it. Just keep going Morgan,
    find your strength from deep within you, and just keep going....we are trying to push you forward, day by day with hope and prayers....