Forever Aware, Forever Changed

February 15.  International Childhood Cancer Day.  A worldwide campaign to raise awareness about childhood cancer.  A time to bring to the forefront the issues and challenges faced every single day--things like equity in treatment, better access to care, and safer methods of restoring the health of these precious kiddos.  A way to show support for the far too many children and families affected by this monstrous disease.

Before cancer came after our family, I was aware--or so I thought.  I knew it was out there.  I had heard of local children fighting it.  I felt for the families affected by it.  But that was it.  I had no clue what it was really like to be completely, totally, painstakingly aware.  That all changed on January 10, 2014.

Paige's leukemia diagnosis rocked our world.  In one fell swoop it changed our priorities.  It changed our mindset.  It changed our lives forever.  I figured on this day of awareness I would offer a peek at  just how aware we are these days of the monster known as childhood cancer.

Paige.  Our independent-from-birth daughter now depends on us more than ever.  It was enough that chemo made her sick.  As a matter of fact, chemotherapy after relapse had her the sickest I've seen.  Now just under 60 days after transplant, we are dealing with some of the more long-term effects.  Bone damage caused by some of the drugs used in treatment is now so severe, she has to wear walking boots in order to handle any kind of weight on her feet.  She can manage short distances in the house, but anything more requires the use of a wheelchair.  This literally happened overnight.  One day, she was walking around just fine.  The next, not so much.  Her bones have taken such a hit it seems like each day there's a new ache or pain.  She made the comment tonight that she is 15 and has the body of a 99-year-old.  My girl puts up a strong front, but I know she would love to experience some semblance of 'normal' teenage life.  

Jeremy.  Paige's 12-year-old brother has been nothing short of incredible.  He likes helping take care of his sister and understands why we have had to make some very big changes around here.  The last 5 months he has spent more time at his grandma's house than our own.  He loves my mom, and she takes great care of him--but being away from us so much was beginning to take its toll on him as well.  Worries and nightmares entered the picture, sabotaging any chance for real rest time.  Getting everyone back under one roof has been quite the adjustment, but I see my kiddo getting a little more settled each day.

Boyce.  Our family's only breadwinner right now, this man has run himself ragged taking care of things when Paige and I were spending extended time at Hotel TCH.  There were days he would take Jeremy to school on the other side of town, make a trip to the hospital for a quick visit and laundry drop-off, and then tackle a full day (or night) at work.  He repeated that cycle every time it was needed--which was quite a bit.  With Jeremy at my mom's so much, Boyce spent many nights home alone.  I can't imagine how this affected him.  Silence can be great sometimes, but in situations like ours it can be downright deafening.

Amy.   After many all-nighters on fever watch (among other things), I have come to the conclusion that nights terrify me these days.  Our nightly routine that ends with prayers and goodnight hugs sends the kiddos to Dreamland and me to Wide Awakeville.  When I do actually doze off, it's for minutes at a time--there is no real sleep.  It could be a combination of all sorts of things, and I'm sure as things settle down that I will too.  I hope.  

Hope.  That's the key.  No matter how aware we are, no matter how hard cancer has tried to attack us, we have hope.  For over two years now, I have shared how our faith in God has brought us through the toughest of days.  Through the devastation of a cancer diagnosis, intense chemotherapy, and its scary side effects.  Through relapse and its uncertainties.  Through bone marrow transplant and the fight to get our daughter healthy again.  That faith has not been shaken.  I know He has never left us--not for a second.

This journey has changed our family in so many ways.  It could quite honestly have ripped us apart, but it's actually done the opposite.  Our bond is stronger.  Our faith is stronger.  We are forever changed.

Be joyful in hope, patient in affliction, faithful in prayer.   Romans 12:12