Saturday, October 13, 2012

A Little Normalcy?

This past week has been spent winding down from the excitement of the recent bake sale and getting back to somewhat of a routine.  I would love to say things are 'normal" but that won't be a word we can use anytime soon.  I got to spend a wonderful spa day and catch up with a high school friend, which was much needed and welcome.  Thanks Julie for treating me!
Adam and I even got a chance to celebrate our 9th anniversary and went for a "date night" while a good friend watched the girls.  To say they were excited about hanging out with Kellie would be an understatement.  Adam and I got a few gym days in while the girls played together in the play area.  They enjoy swinging on the rings and running around on the gym floor after class.

Gabriella is a bundle of energy right now and is enjoying life.  She is doing so well and we are glad for that.  She loves to "perform" in the living room to whatever recent halloween music is playing by getting up on the foot stools and dance around.  Time to enroll in dance class.  Her ANC counts dropped as expected after the three drug chemo and flew off the charts by Thursday with the help of her nightly GCSF injection.  Something we still dread but it's gotten much easier.  The doctors are trying to figure out why her immunity drops so quickly after we stop the injection and at one point, we were looking at giving her the injection every day until her next three drug chemo.  Normally we have about a 10 day break in between but this is something that is still being determined.

Bridget is pretty amazing.  She is fully potty trained (except for night time) and did it all by herself.  Last week, I was so tired of her having the "me" (pacifier) in her mouth that I told her "no is only for sleeping".  This was our original plan but radiation was so wearing that we just did whatever to get through it.  She wasn't too happy but complied quickly.  It's amazing how much more she talks and how well we can understand her.  A simple concept really.  She still loves to help give G her medicine and now likes to get her "port accessed too".  The other day, she was insistent about it so our nurse, Ellen did a pretend access.  She got her bandaid on her chest as well and made sure to show me when I got home.

This week also brought the return for a few days of work for me.  My manager Maryanne, has been completely supportive during this time and understands how difficult it has been.  My 6 months leave was coming up and it was time to make a decision.  After Adam and I talked about it, I knew I didn't want to loose my position.  I worked too hard on being a nurse to leave it, plus it's only one day a week at the least.  Kaiser has been an excellent employer to work for and it would be hard to find the position I have anywhere else.  The thought of going back to work, even one day a week brought on many mixed emotions.  I need some normalcy but will I be able to concentrate on the care of another patient knowing my daughter might need me at a moments notice?   Will I be able to "check my sh*t at the door" (something I was taught about nursing from the beginning and used to be able to do really well) and perform my tasks?  Maryanne worked with me to find hours where I could catch up on my annual skills and the yearly requirements Kaiser nurses need to perform before getting back on the unit.  It's nice to have the opportunity to "get my feet wet" and slowly work my way back.  At first, it was strange just being there and took a while to get used to.  As I was leaving, I was happy to have made this little accomplishment.  The girls had a blast with daddy (as usual) which made everything that much better.

The somewhat "normal" week we had also came with the news of another little warrior loosing her battle to cancer.  Heartbreaking, just heartbreaking.  It just makes me ill to my stomach to hear outcomes like this.  It shouldn't be this way.  Being a part of the pediatric cancer world, you never really get to leave once you're in it.  As much as I would like for life to become "normal" again, I don't know if it ever will.  Knowing these little warriors still loose their battles and don't get the chance to grow up, it won't be.

My mind is often distracted and fogged by cancer thoughts which makes it hard to focus.  It's the reason why I stay so busy with whatever positive I can involve myself in.  Whatever I can do to make a difference and to make this journey more positive for my little girls, I will do.  Cancer continues to haunt me in my dreams... or more appropriately in my nightmares.  I can consciously push it out of my thoughts during the waking hours but at night, the worries creep in and I can't stop them.  Sleep is few and far between but somehow, we learn to manage.

We are far from over with this journey as we come to the end of week 26 of 42.  In a little over a week, we will have our next round of three drug chemo with another doctor's meeting to discuss our progress.  The end of the month will bring a scans for re-staging as well as another procedure for an exam and biopsy of the primary tumor site to make sure the cells are responding appropriately.  This will all happen over a few days but it's not going to stop us from Trick or Treating and having a lot of Halloween fun!

1 comment:

  1. Keep staying positive...even while you're trying to go to sleep. That's one thing I remember thinking was that you HAVE to truly BELIEVE everything is going to be okay. And I know it's hard when you hear about other precious children who have lost their's heart-breaking. Just keep believing that it won't be G! You guys are doing great. She's doing great. And little sis is doing great. You need your sleep more now than anytime. So just take deep breaths and repeat to yourself as you close your eyes that "everything is going to be okay." Enjoy some "normal" time...I so know how that goes. Big hugs to you all! We're always thinking of you!
    -Kara, Matt, Bennett, Carter & Davis