Monday, February 15, 2016

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

Saturday, February 6, 2016

The Roller Coaster Ride Continues

Today marks 50 days since Paige's bone marrow transplant, and we are spending it in an all-too familiar place these days--the BMT Inpatient Unit.  Since early December, we have been on a roller coaster wilder than anything I've ever seen in an amusement park.  As a matter of fact, I can just about place the events of the last several months into their own 'coaster categories.'

Uphill Climb.  As the car makes its way up, up, up those steep inclines, riders feel a resistance of gravity as they are pushed back into the seats.  This is accompanied by a sort of nervous anticipation of what lies ahead.  What a perfect analogy for our journey from relapse to a second remission.  The out-of-nowhere repeat attack on her body was so aggressive, Paige had no choice but to slowly make her way up that steep hill that might as well have been a mountain.  Each round of chemo made her feel as though she was being pushed--or shoved--into her seat for this ride she just wanted to be over.  Each round hit my girl harder and harder.  Each round was followed by nervous--at times, frantic--anticipation of what the biopsies would show.  Would there be progress?  What was on the other side of this hill?

Big Drops.  Riders reach the peak of the roller coaster and quickly descend into a 'controlled' freefall, often experiencing a floating sensation that either calls them back for more or sends them running in the opposite direction.  We made it to the top of the hill--a much steeper climb the second time around--when Paige reached remission once again.  It was a quick plunge into the world of Bone Marrow Transplant.  Multiple tests and studies to ensure her body was able to handle the process.  So much blood drawn it would put the average adult on the floor.  A whole new medical team to care for her from this point on.  By the time we were admitted for pre-transplant chemo and radiation, that freefall sensation seemed to be part of our daily life.

Loops.  Riders hold on for dear life as their car progresses up a continuously upward-sloping piece of the track that forms a complete circle.  At the upper-most section of the loop, riders are completely upside-down, turned topsy-turvy at a high rate of speed.   Once Paige received her stem cells on Day Zero--her 're-birthday'--it was time to head back uphill as we waited for engraftment.  The first few days saw a slow climb upward, and then the craziness began.  Paige fought one effect after another: fever, mucositis, digestive tract issues, and extreme fatigue to name a few.  Numbers would start to improve, then go back down, then improve once again.  There were days it felt like we were stuck at the top of that loop--hanging upside-down and holding on as tight as we could.

Thankfully, Paige engrafted within the predicted window of time.  Her blood and bone marrow are now 100% donor, giving her body a much better chance at making healthy cells.  The biopsy and lumbar puncture around Day +30 were negative for leukemia blasts.  The blessing of those incredible results kept us 'buckled in' on days when it seemed like we might just fall off the ride.

Corkscrews.  Similar to a loop but 'stretched' with entrance and exit points further away from each other, this feature literally sends riders into a tailspin.  I would say our world since the initial BMT discharge in mid-January has seen more of these than any other feature described thus far.  In fact, it seems like we've been in one very long tailspin.  Here's just a glimpse at the events of the last 25 days:
     Re-admission for fever less than 48 hours after discharge.  A virus and Graft vs. Host Disease.  Discovery of bone damage in ankle and tibia of each leg--gotta love chemo and steroids.  Obtaining and getting used to devices that will help mobility as we hope and pray these issues resolve.  Another inpatient stay thanks to another fever.  Both lumens (access points) on PICC line decide to stop working--thankfully this was addressed by hospital staff today, as they deliver fluids and medications necessary for Paige's recovery.


I know this ride will slow down at some point.  Roller coaster rides don't last forever.  We may be going through a crazy time right now, but all those loops, twists, and turns will lead to a straighter, calmer path.  We'll pull into the station and unbuckle the seat belts that have been holding us in so tightly.  We'll happily plant our feet on solid ground and begin a new season in our family.  A season of healing.  A season of renewed hope.  A season of thankfulness like we've never known before.  How I long for that day!

Trust in the Lord with all your heart, and do not lean on your own understanding.  In all your ways acknowledge Him, and He will make straight your paths.   Proverbs 3: 5-6