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

No comments:

Post a Comment