Thursday, October 2, 2014

Day 2, 31 Days to Hope with Childhood Cancer

Hi! Exhausted over here!  Today was a perfect chemo day.  That's great, eh!  That means everything went as it should. Phew.  We had to be there for 8:30 am, and CHEO is an hour from here...Luke got his blood work done, via his port a cath and then we waited around a while until he got his chemo.  The resident Dr. nearly gave me a heart attack, as they like to do..maybe in hopes of practicing resuscitation on parents?  He said Luke's counts were good, except for one that was low..turns out, it was fine, just low from the daily chemo.  I honestly wonder if they don't realize  how on edge us parents of cancer kids are.  All we care about is the health of our kid.  Nothing wrong?  Don't worry me with WBC, ug.
 In any case two weeks ago, his neutropolys were sky rocketed to 8.0 and today, they are back down to 1.1, which is find, not too low, and not too high.  Things are where they should be.  He's starting his next round of steroids tonight, and that continues on until Tuesday, but as you all know, that really then takes about to Saturday next, to be out of his system.  His siblings are ready for the 'meany medicine.'  Sadly, we are never really ready to watch our boy go from nice and slightly difficult, to mean, and sobbing, exhausted, red cheeked, angry, violent, starving, sweating, and inconsolable. 
I'm starting to feel it time to also confess that I am going away this weekend.  First time I've ever gone away in the the 11 years as a mom.  I'm going on my first ever Christian retreat, and poor hubby is home with the kids, and Luke on steroids.  I do know they will be fine, and in super great hands, and I do know it's good for me to keep building my faith, and my independence...however, I'm going to feel rotten leaving Luke, knowing how hard he finds steroids...even with mama here by his side, rocking him.


So that was today so far...we are tired, we are thankful, we are feeling like we got this under control, but we know at any point, any bruising, and bad blood results, and off behaviour, and fever, can send us right back to square one..frig.  I wish there was a magic cure.  A cure that stuck for sure. 

 Today while we had our little chemo, we prayed and thought of our friends who have children who are a lot more rough.  Kids who are in a place we were, or a place we never want to be..our minds and hearts keep going there.  I know I need to keep a healthy distance, but I love these families.  I look for little pleasure and little joys, and I live my days with thanks.  Do you?

 Here is my strong boy, who doesn't look the image of 'cancer' three years in, does he.  Lucky lucky Lukey!  He's got a full head of hair, he's chubby, thanks steroids, and he's got a lot of energy.  Woot woot.  What lies behind the scenes in our lives, is seldom seen, and seldom obvious.  We never know what someone is enduring, has endured, or what they are feeling.  I know now why I love the 'wordy' art work around my house, signs and tattoos help label what we want to say, or how we feel. 

Some days, I've had Luke wear our pin that says 'childhood cancer sucks,' but that isn't the answer either.  Of course we want  the world to know our hurt, so they can offer some solace, some compassion, some help.  Over time, I realize, we all need to be seen, heard, loved on..but all the shouting from the rooftops really does little...
I still am the one who goes to bed with the heavy heart, heavy burden, and wake up with this responsibility, and privilege.  No matter how many people know, it's still our family and our life..but I tell you, it does feel good to know we are loved and supported, and for this, I thank YOU!


Anonymous said...

Once again I enjoyed reading your blog. I am very happy Luke's chemo went well if chemo can be well. PRAISE GOD! Weekend away after 11 years well deserved. Get lots of R/R and spending time with God can only make us better and stronger in our faith. Here is one of my favorite Psalms Verses 17:6 I am praying to you because I know you will answer, O God bend down and listen as I pray. HAVE A GREAT RETREAT!!!!!

Laura Kelly said...

I hope and pray you have a wonderful weekend! The kids are in great hands. You are so often on my mind and heart. Laura