Monday, September 28, 2015

The Waiting Game

Every Monday I receive a text from our local Christian radio station.  It contains a short prayer and an accompanying Bible verse.  When I read today's message, I said a prayer and moved on about my day. Little did I realize this verse would all but shout at me later on.

First off, I must say I am so thankful for an uneventful weekend here in our home away from home.  The fevers Paige spiked on a nightly basis last week finally subsided, and we were able to discontinue an antibiotic that had been wreaking havoc on her stomach.  We joked that one of our PCA's (the awesome ladies that take care of vitals among other things) chased the fever away with her "Whip and No Fever Nae Nae" dance outside our door...that lady is a hoot!  Transfusions of red blood cells and platelets went very smoothly, and we began to see Paige's energy and appetite come back.

While we were happy to see the fever and other general yucky feelings go away, we were also hit with the realization that Paige's hair was making yet another exit from her head.  It came as no surprise considering the chemo she received a couple of weeks ago--but it certainly wasn't easy to watch again.  Her beautiful curls, which she had finally begun to embrace, were coming out in clumps on her pillow. Paige made the decision to go ahead and have us shave off the rest--just another demonstration of the incredible strength of this girl.  She is fifteen--and losing her hair for the fourth time in less than two years.  As I've told her many times before, I need her here more than we need that hair.  Besides, she does rock that bald look!

Okay...back to today's verse.  The prayer was about trusting God moving in our lives even when we can't see it.  About asking Him to calm our spirits as we wait for Him.  It's not the easiest thing to do, and I have continued to seek that peace and calm assurance I felt upon Paige's original diagnosis.  We are about three weeks in on this 'relapse detour,' and I am still waiting on that peace.  In the meantime, my head and heart are battling it out--and I'm a mess. 

We received a sort of one-two punch today.  First up was the news that after the initial round of hardcore chemo, Paige still has leukemia blasts present in her blood.  She is not yet in remission, so sometime in the very near future she will undergo another bone marrow aspirate.  This will allow her doctors to determine the safest and most effective way to get rid of the remaining cancer cells.  

Once remission is achieved, we move to the next part of treatment--a bone marrow transplant.  Boyce, Jeremy, and I were tested a few weeks ago in the hopes one of us would have that perfect compatibility.  That delivered the second punch of the day--none of us matched my precious girl, so it's on to the national registry to locate a match.  

So for now we wait.  Wait on blood counts.  Wait on procedures. Wait on a plan.  I believe with all my heart God is still working here.  A sweet friend reminded me today that He is a healer, a conqueror, a miracle worker.  Though I struggle with the 'why' on a daily basis, I will continue to thank God for the healing He has done--and the healing yet to come for this beautiful girl.

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

Sunday, September 20, 2015

Rough Road Ahead

Two weeks ago my heart shattered into a million pieces with the news of Paige's relapse.  I tried really hard to focus as our doctors went over their plan to aggressively attack the cancer cells--and how it would likely be even rougher on her body this time around.  The conversations were much harder than before, and some days it feels like the tears won't ever stop.  But then they do, and we continue on this road--with its ups and downs.  Here's a glimpse into our last few days:

Up: Paige's body tolerated 5 straight days of intense chemotherapy.
Down: Fluid buildup in one lung made a chest tube necessary.
Up: 3+ liters of fluid drained led to much-improved oxygen levels.
Down: ICU time to make sure we were only dealing with fluid
Up:  We finally made it 'home' to the oncology floor.
Down: All the time confined to a bed took a toll on Paige's muscles.
Up: Physical therapy and moving more helped ease pain.
Down: Counts are quickly dropping and 'yucky' feeling is back.
Up: Our room is re-organized, and we have visited with friends.
Down: Nausea returned with a vengeance.  Shivering wasn't far behind, and we are now on fever watch.  It's coming, and it will be sooner than later.  It's a necessary part of the process as chemotherapy wipes out the good cells along with the bad.

One of the toughest parts of this evening was seeing my precious girl in tears, questioning why this had to come back when she had been doing just fine.  She even told me she was sorry I had to go through this with her again.  That one just about had me on the floor.  All I could do was hug her, stroke her beautiful curls that will soon be gone, and remind her that she had no reason to apologize for anything.  That while I had no answer as to why this happened, I do know that in all of this God is still in control.  He has a plan for her life, and it's a good one.  Scratch that--it's an amazing one.

We have a rough road ahead, but our many, many prayer warriors are lifting Paige up every day.  I believe with all my heart those prayers are helping get her over some of the bigger bumps we've encountered on this detour.  Keep 'em coming, please...this is a long journey.  It helps so much to know we have friends joining us in this fight.

Continue steadfastly in prayer, being watchful in it with thanksgiving.   Colossians 4:2

Tuesday, September 15, 2015

Caution: Detour Ahead

Anyone who drives has more than likely encountered one of these warnings at one point or another.  They can be quite inconvenient, forcing a longer route to your destination--but they serve as a warning nonetheless.  Too bad life doesn't have those same kinds of warning signs--signs giving just enough of a heads-up to prepare for battle.  Unfortunately, that's not the way it works.  Sometimes those detours take you on journeys you wouldn't wish on your worst enemy.

In the last 20 months, our family has experienced two significant detours--ones that could have left us questioning every step on our path, but instead have found us pressing on, no matter how difficult it is to put one foot in front of the other some days.

Paige's initial cancer diagnosis in January 2014 turned our world upside down.  Our beautiful daughter--the healthy kiddo--had leukemia.  We could no longer go forward with our planned route.  In fact, there were portions of this detour that found Paige and me on separate paths from Boyce and Jeremy.  From clinic visits and hospital stays to school and work schedules--we spent more time apart than together.  Reaching that checkpoint of maintenance therapy was indeed a blessing for us all.  We even began to settle into a type of normalcy--if there is such a thing.

One week ago--just two weeks into the school year--we hit a second detour.  In some ways this one is even more devastating than the first.  Just nine months away from the completion of Paige's treatment, an ER visit for a swollen patch around the base of the neck led to the discovery of a mass in her chest and blasts in her bone marrow.  Paige's leukemia has relapsed, and this aggressive cancer must be attacked just as aggressively.  We must go full-force with treatment to hit remission and receive a bone marrow transplant.  

This evening marked the end of five straight days of very intense chemotherapy.  Even that road map had a detour into the ICU after a procedure.  Three tough drugs given over four-hour periods each day--but it doesn't stop there.  Now, we wait.  Over the next few weeks, Paige's body will get weaker, and her counts will drop--as she slowly recovers to a point where subsequent tests will determine the progress made.

With no warning whatsoever, my girl is gearing up for yet another battle with this monster known as childhood cancer.  Can she do it again?  Absolutely!  God had her in the palm of His hand the first time around, and I have no doubt He has her again.

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