Wednesday, May 25, 2011

It's been a long time..

It's been a long time since I've sat down and actually published a blog.  I have one that I started, then walked away from a week ago.  I've been finding it hard to write without sounding like a robot going through the motions trying to get to maintenance with my sanity in tack.  So lets rewind to last week...

Looking out the window, wanting out.
Monday we were released from the hospital, it felt more like a jail break, Brinley was giddy to go home.  Being stuck in a 14x14 room with nothing to do...and with a very demanding, bored, impatient 4 year old is no holiday.  Although I don't blame her for being grouchy most of the time, and I'd like to say she actually took isolation better than I had expected.  However near the end we were both getting on each others nerves, it was very clear that we don't make very good roommates.  Over the weekend Blake came in and rescued me, but only after driving 10 hours to drop Carter off with my parents for the week.  Did I mention my husband is a saint? That's right, he drove 10 hours, then volunteered himself to be an inmate of 4E3 room 12 for 24 hours.  I was happy to go home, but found that there wasn't a thing for me to do.  Blake had taken care of the laundry, dishes, vacuuming, etc etc etc...So I had to sit in an empty, quiet house, by myself.  Normally I love moments like this, but this time I felt overwhelmed and sad.  My daughter was in the hospital, her body trying to recover from an infection that most of us get and can fight off before we even notice or get sick.  My son was 10 hours away because we didn't know what the next week held for us, and simply because we couldn't take care of him, see him off to school, welcome him home, etc.  That in itself was a huge hurdle for me.  I just wanted my family together again.

The weekend came and the doctors had hope Brinley would be released early because the infection only turned out to be strep.  They did another blood culture that came back negative which was great, but we still had the neutropenic factor staring us in the face.  Her counts were recovering, but she didn't have an immune system.  So instead to being home for Sunday, which I had hoped, Blake and I were able to slip away for a few hours (with the help of our friends)  and have our 6 year anniversary dinner.  How things can change in a year...Last year we were beach side, drinks in hand, celebrating 5 years of marriage in Mexico.  This year we've exchanged that for the Stollery Children`s Hospital.  But one thing has stayed the same, I`m still sitting beside this wonderful guy who is keeping my sanity intact with his jokes and easy manner when dealing with this challenging time.

During last week Brin and I stayed home, other than our daily trips to the hospital to have IV antibiotics.  Her blood counts have been picking up  by themselves which was a relief.  For a while her hemoglobin was sitting around 72, and then jumped to 89 so there was no need to transfuse.  My parents returned with Carter Saturday evening and I was thrilled to see that smiling face again.  I missed him so much. 

Tomorrow Brinley will start maintenance.  Of course this is based on her blood results, and something tells me she will be delayed a week, but nonetheless maintenance is on the horizon.  I'm a bit anxious because she will have another lumbar puncture with chemo, and as you know, she doesn't have much luck with anesthetic.  So on top of being witness to watching her get put out, I`m constantly wondering, "what if she stops breathing?", "what if they use a bigger needle again and she has migraines for the week?", "what if she wakes up again in the middle of it?"

I'll be glad when the dust settles.


  1. Great that you are all home now, everyone pulled out the stops to make it all happen, things can work out, and hopefully Brinley will be on maintenance soon. Husbands are always surprising us, but I have to say
    Blake sure goes the extra mile to do all he can to make this journey
    bearable along with you and Carter. Love the dress and hairband combo, that is simply delightful, along with that lovely grin from your super hero
    son. Have a good week with your Mum and Dad, you made it through
    another hurdle with flying colours....

  2. You've almost made it to maintenance!!!!! I know how you feel, like you're on auto-pilot just trying to get to that point on the horizon. Maintenance is easier to deal with, but the first 2 months they will probably be adjusting the dosages of her meds according to her counts, we were going in every 2 weeks in the beginning, but once they found the right dose we started going in monthly. Life seems a little more normal now and it will for you too, and especially for Brinley, her energy levels are gonna be off the charts and she'll seem like her old self again. This was the case for me and most of the other moms I talk to at the hospital had the same experience!! If she gets a delay, just enjoy the week off!:)