Sunday, February 8, 2015

Moving Along in Maintenance

Romans 12:12.  There's that verse again.  The words that found their way into my head and my heart 13 months ago.  The words that have become our way of doing life around here.

Three months ago, Paige reached the much-anticipated maintenance phase of treatment.  It was kind of a 'happy dance' moment, knowing that the intense chemo that slammed her body for almost 10 months was behind her.  The daily trepidation over low counts, inevitable transfusions, and possible hospital admissions had finally come to an end.  More than ever, we were joyful in hope.

Does that mean it's over?  Nope.  Not even close.  Paige's entire course of treatment will end up being about two-and-a-half years in length.  That would put her at the finish line sometime around May 2016.  However, the hardest part, the gut-wrenching part--the part when my beautiful girl was so sick and so weak that she could barely stand up on her own--is now behind us.    One day at a time, one step at a time, Paige patiently and quite courageously pressed on through this time of affliction.

So where are we now?  What is this thing called maintenance?  Paige's protocol for this phase is structured in three-month cycles.  Each cycle begins with a lumbar puncture (spinal tap), during which a small amount of spinal fluid is collected and replaced with a small amount of chemo.  This procedure is performed to make sure the spinal fluid is still free and clear of cancer blasts and usually results in a few days of rest and recovery for our girl.  It really wears her out.

In addition to the lumbar puncture, Paige receives a short chemo infusion through her port at the beginning of each month.  This particular chemo has a way of affecting the nerves, and Paige often experiences slight twitching of the hands and fingers at the end of a long day.  We've learned to wrap up schoolwork early in the evening, giving her the chance to call it a day before the chemo effects force her to stop.

Not only must she receive the monthly chemo infusion, Paige has two oral chemo meds she takes at home.  One is administered every night, the other once a week--which is a good thing, as the dose for the latter is 13 1/2 pills.  Yikes.  Add in a heavy-duty antibiotic three days a week and a five-day steroid pulse each month, and I think that covers the required medications.  Keep in mind we have meds for nausea as well as calcium and Vitamin D supplements to build up bones that were damaged from heavy steroid therapy during frontline treatment.

Oh yeah, and she's juggling school with all of this as well.  High school.  Advanced classes, no less.  Paige has been back in school about three weeks--half-days for now.  She's working to catch up on older work while keeping up with current assignments.  Still recovering from radiation to her brain (which can take a few months), some of the more intensive reading is tough.  She'll get headaches if we don't break it up into short segments.  It gets done--it just takes a little longer.  From the start, though, Paige has been adamant that nothing about cancer or its treatments will stop her from accomplishing things she wants to do.  That's my girl.

In a nutshell, our journey is far from over.  In fact, I don't know that it will ever really be over.  A fever still means an ER visit, with antibiotics and a hospital stay real possibilities.  Aches and pains will probably always place me on high alert.  However, all I have to do is look at my daughter, and I can see Paige getting better every day.  She is moving along in the maintenance phase, and we remain faithful in prayer for her complete recovery.  God is doing a mighty work here, and we will continue to give Him all the glory.

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete lacking in nothing.   James 1:2-4

Tuesday, February 3, 2015

Struggling to Quit Struggling

I'll be honest...the last few weeks have found me struggling.  Struggling with Paige being back in school, even if only for part of the day.  Struggling with worry over her upcoming procedures or everyday aches and pains and trying not to let fear take over.  Just plain struggling with everything.

A little over a year ago, we were floored by the news of Paige's diagnosis.  I've shared that we made the decision that very day to pick ourselves up off the floor and trust God's plan for Paige's life and His timing for her healing.  For the last 12 months, I've managed to hold it together--standing firm on faith and hope--as we made our way along this path.  Actually, it was God holding me together, holding me up when it felt like my knees could buckle at any moment.  So what in the world is going on with me now?  Why am I such a stinking mess?

The answer is quite simple:  I've come to find that I'm human.  Yes, human.  After running on faith, hope, and pure adrenaline the last year, it's become very clear that I do not possess superhuman powers.  Of course, I've always been aware of this fact--but now that Paige has reached the much-deserved maintenance phase and I've had a couple of minutes to stop and's hit me.  And it's hit me hard.

I have had more worry, anxiety, and just plain fear running through me the last few weeks than all of 2014 combined.  Will Paige be okay back in a school setting?  What do those aches and pains mean? Are they normal--or something else?  Now that chemo is spaced further apart, will the cancer cells stay away?  I had to stop and remind myself that these things are just not in my control.  Somewhere along the way, when I stopped to breathe, did I take my eyes--and my focus, for however brief a time--off of God?   I could feel worry and fear trying to take over and knew I couldn't beat them on my own.

And then--I had 'a moment.'  Really, it was a combination of several moments.  Every song I heard, every quote or scripture I came across--all served to remind me to get my focus back where it needed to be.  God was gently turning my eyes back to Him.  It is by His grace, His mercy--nothing else--that we are still a family of four.  That we have this time to figure out our new way of doing life.  That nothing on this earth is guaranteed and to treasure that with which I have been blessed.  Message received.  I will continue this journey one step at a time, one day at a time, placing my faith and trust in the Almighty God.  That, my friends, is more than enough.

...the God of all grace, who has called you to His eternal glory in Christ, while Himself restore, confirm, strengthen, and establish you.   1 Peter 5:10