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

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 breathe...it'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

First Day of School!

Today started off like any other morning over the last few months.  Paige and I dropped Jeremy off at school and wished him a fabulous day.  From there it was usually back to the house for breakfast and schoolwork--but today was different.  Today was extra special.  Today was my girl's first day of school!

Yes,  it's January.  School has been in session about 5 months now, and Paige has been working very hard to keep up with classwork while undergoing some pretty intense chemotherapy.  So, why is today such a big deal?  This is Paige's first day to attend classes at school in over a year!

We've been striving for this day for a long, long time--so why am I such a ball of nerves over this?!?  To my defense, we have been joined at the hip for the last year.  I have been with this girl through every chemo treatment, procedure, MRI--you name it.  I have been her physical support when she was too weak to get up from the couch on her own.  I have comforted her through nausea, pain, tears, and fears.  Getting that girl well again has been my primary focus the last 12 months.

Whew--that was quite the rundown!  Time to go back to the "I've-got-it-all-together" version of myself.  I know this is a good thing, for Paige and for her mom.  She went through all of the 'normal' kid stuff last night and this morning.  Deciding what to wear.  Difficulty getting to sleep.  First-day jitters.  Questions about just how different high school would be.  Stuff every kid experiences.  It may sound crazy, but she actually seemed okay with all of those feelings--because they were normal.  She's been needing this time, and it's finally here.

Her stamina isn't quite where it needs to be to attempt full days just yet, so we are beginning the transition with partial days.  Paige will attend her first 4 classes--allowing her to be there for the all-important lunch period with friends--and continue homebound instruction for the remaining 3 classes until she's able to make it the entire day.  We're not putting any kind of timeline on it.  It depends on maintaining counts, continued good health through treatments, and a whole host of other variables--but that's okay.  If I've learned anything over the last year, it's to take things one day at a time.

Our journey of faith continues.  Paige still has about 18 months left in her treatment, but having her health at the point where it's safe for her to be back in school for any amount of time is a giant milestone.  I couldn't be more thankful.

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

Journey of Faith - One Year In

Today marks one year since this journey of faith began.  One year since we heard the words no parent ever wants to hear: Your child has cancer.  One year since we were brought to our knees, crying until the tears would no longer come.  One whole year.

Quick review: Paige was sick.  Very sick.  A lingering cough and mild breathing issues quickly escalated into severe respiratory distress.  A trip to the emergency room resulted in a 9-day hospital stay.  A preliminary pneumonia diagnosis was quickly changed to cancer.  Cancer.  One year later I still have trouble grasping the sometimes harsh reality of this new way of doing life.

Don't get me wrong--there's much to celebrate, and I'll get to that shortly.  I've got to be honest, though.  This week has been rough.  Really rough.  Thinking about where we were at this time last year knocks the wind out of me if I linger there too long.  Let's just say God's perfect timing led us where we needed to be that night.  Paige fought back tears last night when she came across some goofy photos we had taken with the iPad during last January's long wait in the ER, thinking we'd be home in a few short hours.  When memories of that traumatic time hit, they hit hard.  For the last 7 nights, Paige has been awakened by nightmares that force her to relive the events of last year.  She wakes up sobbing and gasping for air, feeling like she can't breathe.  We talk and pray through it, taking lots of deep breaths together as she settles back down.  The fact that I can't make this stop cuts me to the core.  I can only pray that this too shall pass.

As rough as this week has been, it's also cause for joyful celebration.  Paige is here with us, getting stronger every day.  After several bumps in the road, she finally made it to the maintenance phase of treatment and will soon make a return to school--something we couldn't imagine several months ago.  My daughter's strength and courage never cease to amaze me.  I have seen this girl push herself through treatments and side effects that would have even the toughest adults on the floor.  I have watched her grow stronger physically, mentally, and spiritually, trusting God to bring her through good times and bad.  She has set the bar pretty high for the rest of us.

Paige's journey is not a solo mission.  There's a saying in the childhood cancer family that "no one fights alone."  Truer words were never spoken.  God has held her in His mighty hands from the very beginning.  Family, friends, nurses, doctors, and countless others have linked arms with us in this fight.   She is not alone.  We are not alone.  Together we stand firm on faith, trusting in God's perfect plan for Paige's future.  For our family's future.  Hope is a pretty amazing gift, don't you think?

2014 - A Look Back Before Moving Forward

Hey there, 2014.  I know you're on your way out and everything, but I'd like to take a few moments to look back at the year that changed our lives forever.  It won't take too long, I promise.  There are parts I can't think about for too long, times I'd just as soon forget--though I know I never will.  Trust me, 2014, I'm as ready for you to get outta here as you are.  I just wanted to show you that you didn't get the best of this family.  Someone bigger and tougher has had our backs all along.

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January.  Talk about starting the year off with a bang.  Paige's leukemia diagnosis rocked our family to the core.  Brought us to our knees like nothing we'd ever known.  Totally broken, I completely let go and turned the whole thing over to God.  He could control what I couldn't--and He did.  He gave me a peace that has sustained me from Day One.

Cast your cares on the Lord and He will sustain you...  Psalm 55:22

February.  The reality of cancer hit hard.  Multiple chemotherapy treatments and procedures caused Paige's body to become significantly weaker--to the point of her knees buckling and sending her to the floor one day.  Her hair thinned more and more each day, devastating to a teenage girl.  Yet in the midst of all this reality stuff, Paige's attitude remained unchanged.  This, she told me, was "just life right now."  God was always right there to give Paige (and the rest of us) strength in difficult times.  He still is.
I can do all things through Him who strengthens me.   Philippians 4:13

March.  We rejoiced in the news that Paige's bone marrow, blood, and spinal fluid showed zero signs of cancer cells!  The giant mass on her chest--the monstrosity that set everything in motion--was also GONE!  Ten weeks into a journey of continuous prayer and unwavering faith--and Paige was officially in remission.  God was healing our girl.
And whatever you ask in prayer, you will receive, if you have faith.   
Matthew 21:22 

April.  Three months of intense chemo finally took their toll on Paige's once long and beautiful hair.  She decided it was time to let go the last strands of what she now referred to as her "old man biker hair."  The strength and courage she exhibited in that moment left me teary-eyed and speechless, but not surprised.  By that point, she'd realized God was always with her--whether it was through chemo or getting the rest of her hair shaved off.  We, on the other hand, realized this girl can rock the bald look!
...Be strong and courageous...for the Lord your God is with you wherever you go.   Joshua 1:9

May.  We witnessed one of the scariest moments since the start of this journey.  A week after her first hospital stay for high-dose chemo, Paige experienced stroke-like symptoms--legs and feet that felt heavy, an arm unable to move, and speech so slurred it was difficult to make out anything she was saying.  A battery of tests, including an EKG, CT scan, and MRI, ruled out a stroke.  It turned out to be an extreme reaction from the previous week's chemo combination that called for an admission to the hospital for rescue medications and monitoring.  She rebounded quickly enough to go home just a couple of days later.  Those were some scary days, but God was in control the whole time.  He held Paige in His hands while holding the rest of us up.
So do not fear, for I am with you...I will strengthen and help you; I will uphold you with my righteous right hand.   Isaiah 41:10

June.  Due to some necessary adjustments in her treatment plan, it was a really good month for Paige.  Her body was tolerating the medications, she had sufficient time to rest and recover in between treatments, and she was able to be a kid.  For a girl who basically had to grow up overnight, this was a really big deal.  Hanging out with her friend.  Taking in a movie.  Fishing and swimming with the family.  It did wonders for her spirit, giving her a glimpse at great times to come.  She needed it.  We all did.
For I will restore health to you...   Jeremiah 30:17

July.  We discovered another downside in Paige's treatment regimen.  Steroid therapy did a number on her bones, weakening them to the point where a seemingly painless slip resulted in a fracture in her right fibula.  This girl was in pain day and night until we were able to get a medication schedule that would give her some relief.  A walking boot--which she later 'Paige-ified' with plenty of bling--gave her much-needed stability to get up and around again.  I remained faithful in prayer, continuing to ask God to restore Paige's health, and thanked Him every day for the healing we were seeing.  As the days went by, I learned more and more what it meant to pray without ceasing.

Pray without ceasing...   1 Thessalonians 5:17

August.  This month brought Paige's birthday and the start of school--both done a little differently this year.  A bone density scan bright and early on the morning of her birthday combined with intense chemo a few days before meant a subdued day at home.  In remission, cancer-free.  Pretty great birthday gift.  Her first day of school a week or so later also went without the usual hoopla, as she was still receiving homebound instruction.  Bloodwork and a transfusion took the place of first-day photos, though rest assured--when she does return to school, this mom will be taking all the pictures Paige will allow!  Thankful for the hope given to us through Jesus, I can wait patiently for photo ops to come.
I wait for the Lord, my soul waits, and in His word I hope.   Psalm 130:5

September.  Hospital admissions were the mainstay of this month.  Fevers and low ANC counts kept us at TCH more than we liked--yet I couldn't be more thankful that those were the only things keeping us there.  During one of our stays, Paige was in good enough shape to participate in a ribbon-tying ceremony commemorating Childhood Cancer Month.  She was also beyond excited to meet Dr. Jennifer Arnold--so excited she couldn't do much more than smile!  We finished out the month with the first of Paige's high-dose chemo 'make-up' administrations.  Like she had done so many times before, Paige faced it with strength and bravery that is just plain inspiring.
Be joyful in hope, patient in affliction, faithful in prayer.   Romans 12:12

October.  Our family was due for some fun.  Paige was in between hospital stays for chemo when The Sunshine Kids Foundation and former Houston Astro (and future Hall of Famer) Craig Biggio hosted their annual baseball party.  It was a day full of fun, complete with batting practice, a catered lunch, and even a swag bag--but the coolest part by far was seeing Paige's favorite baseball player ever visiting with (and joking around with) the families.  This special time--another glimpse at fun times to come--was just what she needed to carry her into the next round of treatments.
A joyful heart is good medicine...   Proverbs 17:22

November.  We crossed another bridge this month when Paige officially began the maintenance phase, which will last just under two years.  The medications during this time will work together to rid Paige's body of any tiny, hard-to-detect leukemia cells that may be lingering, waiting to cause trouble further down the road.  The journey is far from over, but we've hit a significant milestone.  It's time to press on toward that finish line!
But if we hope for what we do not see, we wait for it with patience.   
Romans 8:25

December.  God has met our needs in so many ways this year.  Physical needs have been met through the day-by-day restoration of Paige's health, most recently with the completion of her radiation treatments.  Emotional needs have been met through peace and calm assurance only He can provide.  Financial needs have been met time and time again.  In the meantime, God, who is always faithful, continues His work in our lives.  Our trust, our hope, our everything--is in Him.
And my God will supply every need of yours according to His riches in glory in Christ Jesus.   Philippians 4:19

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Well, 2014...there you have it.  It's been quite the year, but you didn't get the best of us.  We are still standing.  Standing on faith and hopeful for the future that God has planned for us.  Feel free to get on outta here now.  

Can't Put a Price on This Gift

Christmas and my birthday fall at the end of December.  Talk about saving the best for last!  We celebrate the birth of our Savior and exchange gifts with those we love.  Boyce and the kiddos always put real thought into selecting gifts for me, which just touches my heart.  My favorite gift this year, however, didn't come from a store.  It wasn't even placed under the tree--though that would have been a sight!  My most treasured gift of 2014 is having my daughter here with me.

I've been somewhat of a mess this month.  Maybe it's the fact that she's no longer getting the harsh levels of chemo that, while slamming her body, still kept the cancer away.  Maybe it's the fact that she will be heading back to school next month--which I keep telling myself is a good thing, though we will still have many precautions in place as she continues treatment.  Maybe, just maybe--it's the fact that this time last year Paige was getting sick, so sick that just a couple of weeks later we found ourselves facing a giant we never could have imagined.  Regardless of the cause, it was time for a solution.  I needed to stop worrying about things beyond my control and get my focus back to where it belonged--on God and His amazing grace.

Our family always attends a Christmas Eve candlelight service at church.  The last couple of years, because of Boyce's crazy retail schedule over the holidays, it's just been the kids and me.  This year, though, all four of us were there--which I know was not a coincidence.  We needed that time--to worship, to celebrate, and to give thanks together.  It was the best Christmas Eve yet!

Christmas Day was just as wonderful.  Thanks to some special people who wanted to bless the socks off of our family, Paige and Jeremy had presents under the tree, around the tree--basically all over the living room.  It was just awesome watching them open their gifts, excited about the things they'd received.  At one point Paige was sitting there, looking around at everything.  I asked her if she was okay (something I do way too much, I know), thinking maybe she wasn't feeling well.  "I'm okay, Mom," she said.  "This is all just a little overwhelming--that people would do all this for us."  Overwhelming, indeed.

It's overwhelming sometimes to think about how far Paige has come.  How she has handled everything her body and mind have been through.  How she has grown in strength and faith.   I couldn't be more amazed at this girl.  Having her home and seeing the healing in her are the best gifts I could have received this year--or any year, for that matter!

Every good and perfect gift is from above...   
James 1:17

God Meets Our Needs Again & Again

Cast your burden on the Lord, and He will sustain you...   Psalm 55:22

A couple of days before Paige was diagnosed--when she was really, really sick--I dropped everything at work to stay home and take care of her.  It'll only be a couple of days, we thought.  She'll be back to herself in no time.  Little did we know that over eleven months later I would still be home with her.  Of course, there was nowhere else to be--caring for this precious girl through phase upon phase of intense chemotherapy was the top priority.  Outside our little bubble, though, life went on.  Our income was immediately cut in half, but bills were not--they would soon take on a life of their own.  Instinct said it was time to crumble in worry and fear, but God said it was time to stand on faith and trust Him.  We placed our daughter in His mighty hands, yet over the course of this journey, God has shown us time and again that He is holding on to us as well.    

It's more than a little mind-boggling to pause and reflect on just how many times--and in how many ways--God has met our needs this year.  In fact, He continues to do so.  He meets our family's physical needs through the process of healing our girl--and in keeping the rest of us healthy.  He meets our emotional needs by providing peace and calm assurance through the many storms we have encountered along the way.  Storms that could have knocked us to our knees, yet here we stand.  He meets our financial needs by sustaining us through months when money was quite honestly the last thing on our minds.  In fact, our kiddos now have a nice stack of gifts under the tree--all thanks to some amazing people placed on our path at just the right time.  After the year they've experienced, it makes my heart incredibly joyful to know Paige and Jeremy will have a wonderful Christmas morning.

You gain a whole new perspective when your life is turned upside-down, but I've come to really treasure this new point of view.  I try my hardest to live out the verse God spoke to me over eleven months ago--to be joyful in hope, patient in affliction, and always faithful in prayer.  In the meantime, God, who is always faithful, continues His work in our lives.  Our trust, our hope, our everything--is in Him.