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

A Month of Milestones

What a difference a year makes.  Last year at this time we were in the middle of a string of hospital stays.  This year we have taken advantage of some much-needed down time.  Summer is all but over, but I can't let August end without sharing some pretty significant milestones my beautiful daughter has reached.

Camp Periwinkle.  Early in the month, Paige and her brother attended a camp for the TCH oncology patients (and their siblings) funded by a generous organization that works very closely with our hospital.  For an entire week, my girl got the camp experience she had been missing so much.  You see, before all this leukemia mess started, she was a zip-lining, rock-wall climbing kind of girl.  I'm thrilled to report she is that girl once again!  Paige came home from camp with a few bruises--but they weren't due to dropping counts.  Nope, these bruises were little reminders that the fearless, adventurous girl inside is slowly but surely returning!

Birthday Number 15.  Paige and my husband have created a sort of tradition the last several years in the baking of her birthday cakes.  From giant peace signs to 'tie-dyed' cupcakes to Minions--they have worked together to produce some pretty impressive (and tasty) creations!  Last year was different.  Weak and recovering from a leg fracture, Paige simply wasn't up to baking.  Fast forward 12 months--and the tradition has resumed.  This year's design was a simple sheet cake with a beautiful multi-colored awareness ribbon.  The theme of simplicity carried over to her birthday gifts, with good reason--Paige couldn't think of anything she really wanted or needed.  Her words to me: "Mom, really I'm just happy to be here.  You know what I mean?"  Yes, sweet girl--I really do!

Starting School with Everybody Else.  Paige received homebound instruction the last half of her 8th grade year, as well as the first half of her freshman year.  She did rejoin classmates last January, but it was quite overwhelming, as everyone had already been there several months.  Their routines had long been established.  This year, she was healthy enough to walk through those doors on day one.  The afternoon of day two would have us at clinic for chemotherapy--but I'll be darned if my girl didn't come home and rest up so she could make it back to school the next day!

It's interesting how my perspective has changed since we began this journey.  A few years ago I don't think I would have truly understood what it means to find the joy in each day, to cherish every moment we are given.  I am thankful for the healing God is doing in Paige and for the work He is doing in me--and I want to honor those blessings every day I am given.

You make known to me the path of life; in your presence there is fullness of joy...   Psalm 16:11

Checkpoint - 18 Months

Fear not, for I am with you...I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.   Isaiah 41:10

In January of 2014, our family was rocked to its core when our beautiful daughter was diagnosed with leukemia.  Eighteen months later, we are still standing on the firm foundation of God's promises.  He has given us strength when we had none, hope on the gloomiest of days, and peace that really does surpass all understanding.

With just under a year remaining in treatment, Paige continues to follow her maintenance regimen--nightly and weekly oral chemo, monthly chemo infusions at clinic, monthly steroid pulses, and spinal taps every three months.  Though maintenance is much less harsh on the body than the intense chemo in frontline treatment, Paige still experiences side effects from time to time.  Neuropathy, presenting as 'shaky hands' from time to time.  Spinal headaches lasting up to a week.  Fatigue and nausea.   Thankfully, she has more good days than bad--which is definitely an improvement over last year!

This journey has been an incredible learning experience.  We realize how important it is to find the joy in every day.  Some days that joy is so evident, we can reach out and touch it.  Other days, we must seek it out.  We have discovered the many ways hope presents itself--whether through kindness shown by others or in our daughter's beautiful smile.  We have witnessed first-hand what it means to be patient in affliction (Romans 12:12).  Paige is getting physically, mentally, and spiritually stronger every day, and I thank God for the healing He has done in her--and the healing yet to come.

I leave you with a few photos from our summer adventures that say more than I could ever attempt to write.  Incredible.  Beautiful.  Abundantly blessed.

          

 

  

Our Superhero!

But they who wait for the Lord shall renew their strength...   Isaiah 40:31

But if we hope for what we do not see, we wait for it with patience.   
Romans 8:25

Bringing Home a Little Hope from the Beach

As I've shared before, this verse perfectly describes how we have done life since the beginning of this journey.  I remember sitting in Paige's first hospital room--watching her sleep off those first rounds of chemo.  Completely broken, I read scripture after scripture, praying God would speak to me--and then through me as I put our first blog post together.  The post that would serve as the beginning of our journey and proclaim my complete faith in God's incredible mercy and grace.  This is the verse that clicked with me.  It's all about prayer, patience, and hope.  Hope is an amazing gift, my friends.  Grounded in the Word of God, hope actually keeps us grounded and focused, keeping our eyes on the prize.  It helps us press on through life's struggles.  One of my favorite promises is found in Jeremiah 29:11.  It speaks of God's plans for us--plans that give us hope and a future.  

That's not to say that times don't get tough.  Nobody experiences smooth sailing and blue skies all the time.  We can all find ourselves struggling when life's waters get rough.  That's when it becomes even more important to hold on to even the tiniest glimpse of hope.  Our Lighthouse friends wanted to drive this point home by sending a Hope Box with us on our drive home.  Its contents are meant to serve as a reminder of that incredible week of rest and restoration.  A CD of music.  Bibles for parents and kiddos.  A copy of Jesus Calling for daily devotion time.  A picture frame that will soon hold one of my favorite photos of us with our Family Partners.  And my favorite item--a Hope Jar. 

The Hope Jar is filled with scriptures, song lyrics, and notes of encouragement from the whole Lighthouse team, who prayed over all of the retreat families as they assembled these gifts.  Our jar now sits in a prominent place in our living room, ready and waiting to provide those reminders of hope when we need them most.  I can't think of a more perfect way to bring home a little hope from the beach.

A Place Where God's Light Shines

...let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven.   Matthew 5:16

Last week our family took a vacation.  Yes, a vacation--out of state, no less.  We packed up the car and set out on a road trip to the beautiful Florida coast.  More on that in a moment.  I'm still hanging on the word vacation.  Images of sun, sand, and relaxation fill my mind.  Vacation.  Relaxation.  It's been a long time since those words were uttered from my lips.  Between weekly clinic visits, chemo, and unpredictable counts, taking a break of any kind just wasn't a possibility.  Until now.

Paige is now almost seven months into the maintenance phase of treatment.  She still has a pretty strict regimen to follow, but the time between trips to TCH--combined with the fact school is out for the summer--actually now provides some much-needed down time.  A while back, I learned about an organization called Lighthouse Family Retreat.  They offer families living through childhood cancer a time of rest and restoration in the form of peaceful seaside retreats.  Lighthouse recognizes the enormous financial challenges associated with childhood cancer, and they work with partners and sponsors to provide an amazing experience--a real vacation from the chaos of cancer--at no charge to the families.  Holding on to the hope Paige would be healthy enough to travel, we completed the application process and were thrilled to receive notification of our acceptance to a retreat in late June.

Now...back to our road trip.  Paige had just completed a successful trip with The Sunshine Kids and received a good report on blood counts at our last clinic visit.  It was as good a time as any to test the waters for some out-of-town family time.  Praying for good health and safe travels, we set out on our journey.  Nine hours later, we began what would soon become one of the best weeks of our lives.

Once we checked in with the registration team, we were introduced to our Family Partners for the week.  Family Partners are matched with retreat families and come into the experience with total servants' hearts.  This particular week happened to be a mission trip for a multi-campus church in the Atlanta area.  These amazing people were there to serve, and serve they did!  Our car was unloaded for us, our bags taken to the appropriate rooms in our villa.  A plate of fresh-baked cookies was waiting on the bar, while lanyards, bags, and welcome notes awaited us in our rooms--and that was just the start!

Come to me, all you who are weary and burdened, 
and I will give you rest.   Matthew 11:28

A picnic dinner at the beach was the perfect way to get acquainted and take in some of our beautiful surroundings.  I often found myself staring in awe at the sparkling white sand and blue-green water--and then the sun began to set.  What majesty!  After reminding myself I wasn't dreaming, Paige and I chatted with our new friends while Boyce and Jeremy headed straight for the water.  Who needs a swimsuit when you can walk right into the water in your clothes?  Paige's foot was healing from a cut, but we got to the water's edge for our pic too!  Day One--done!

Each day of the retreat focuses on a central theme. From scriptures shared to the day's activities, these themes would be embedded in all we did.  After breakfast each morning, retreat parents would come together for Common Ground--a time of sharing and fellowship.  We quickly discovered that though we have different backgrounds and circumstances, we share a common path.  It was unbelievably therapeutic talking about this journey with others who truly get it--because they've been there as well.  They're living it every day--just like we are.  The world of childhood cancer can be really isolating.   People don't always know what to say, nor do they always want to know what it's really like. The connections made during Common Ground will remain long past our week at the beach.

While the parents met for Common Ground, retreat kiddos participated in Flip Flop.  Along with children of partner families, they were grouped by age and gender for some fun in the sun.  Swimming, games, and talent show preparation filled their mornings.  Rainy morning?  No problem.  Family partners hung out with their assigned retreat children for games and silliness in the villa.  Our group's card game of choice?  A rousing game of Spoons!  Intense competition, for sure!

After you have suffered a little while, the God of all grace will Himself restore you and make you strong and steadfast.  1 Peter 5:10

We 'Conched Out' each afternoon.  This was downtime for families to head to the beach, hang out at the pool, explore the town, or do whatever we felt like doing.  It was time to reconnect as a family--away from hospitals and clinics, away from bills and other obligations.  A scenic drive along the beach was incredibly peaceful.  Paige pointed out her church camp location from a couple of years ago, Jeremy and I searched for sand dollars and seashells--and of course, there was souvenir shopping.  As we left one of the stores, I was overcome with emotion.  In short, I became a weepy mess.  Why?  We were doing run-of-the-mill touristy stuff.  Nothing special--to many people.  To me it was suddenly a monumental, call-the-newspaper kind of thing.  We were 600 miles away from home--yet there was no anxiety about cancer or treatment or side effects.  There was simply peace.  Paige's health is being restored a little every day--and she looks it.  Last year we called a movie outing or time in Grandma's pool a success--but this year is different by miles--literally!  On our way back to the villa, we enjoyed dinner in the beautiful town of Seaside.  It was a perfect day.

The Lord is my strength and my shield.  
I will trust Him with all my heart.  

He helps me, and my heart is filled with joy.   Psalm 28:7

Evenings at the Lighthouse Family Retreat are FUN and provide everyone involved with wonderful memories.  A luau that ended a little early thanks to a passing storm.  An un-birthday party for the kiddos while parents were treated to a date night.  The last night saw a talent show to outdo all talent shows--amazing acts by the kids and silly contests for the parents.  I haven't seen my husband dance in a long time, but it was awesome to see him get out there with the other dads and ham it up for his kiddos.  We finished off the last evening of the retreat with epic card game battles with our Family Partners, who might as well be actual members of our family now.  To say we clicked with them is an understatement.  I love these people!

Just a few hours later, the time came to leave our little paradise.  Everyone gathered to say their "See You Laters"--they don't say "Goodbyes" at Lighthouse.  Once again, I became a weepy mess as I wished our new friends safe travels.  These people will hold a place in my heart for a long time to come.  We shared so much over the course of a week--and feel beyond blessed to have had this special experience for our entire family.  Rest, restoration, experiencing joy, and finding hope in God are the goals of the retreat.  Those goals were met--in a big way.  "The Lighthouse Song" describes the lighthouse as "a place where God's light shines."  And shine it does!

   May the God of hope fill you with all joy and peace
as you trust in Him.   Romans 15:13

Clothed in Strength & Dignity

What a difference a year makes.  I find myself saying that quite a bit these days.  Paige's health is being restored every day--her hair is even starting to make a comeback.  Her smile--that amazingly beautiful smile--shines bright with incredible hope for the future.

If you've followed our story for long, you know Paige has kept a smile on her face throughout this journey.  Yes, sometimes it was a "smile on demand" as she likes to call it--but a smile nonetheless.  That smile represents incredible strength, courage, and hope that can only be found in God.  I fully believe He has equipped this girl with every bit of physical, mental, and spiritual strength she has needed for this journey.  Recently we've caught a few glimpses of the independent, fearless girl we once knew slowly making her way back to us.  It's pretty awesome to behold.

Three weeks ago, Paige joined 27 other Sunshine Kids teens--with staff and medical reps, but without parents--on a Texas Hill Country Adventure.  Talk about getting back into that independent mode!  They were treated to a week of fun, fellowship, and fantastic experiences.  What a way to celebrate the work being done in all of these incredible kiddos!  It's said a picture is worth a thousand words.  Take a look at just a few images from that week...you might find there simply aren't enough words.

            

Counting our Blessings

It's been a while since I've had some time to write--or think--or just breathe.  May was a busy, busy month.  Paige had clinic visits, chemo, follow-ups to the 'Freaky Friday' reaction, and a lingering spinal headache from her most recent lumbar puncture--and that's just the medical part.  She also had end-of-year projects, state assessments, and final exams to complete.  Since we're still working on building stamina back up, you might guess she was pretty exhausted--I was right there with her. As a technology specialist, the last month of the school year is one of my busiest, craziest times.  Awards, inventory, and equipment collection are just a few of the items on my To Do List.  Did I get it all done?  Nope.  I'll be working on a few things over the next few weeks to get as caught up as possible--and I'm okay with that.  The list will always be there.  We all have one, and the tasks seem to multiply exponentially sometimes.  But it's okay.  Sometimes we need to push that list to the side, take a breath, and count the abundant blessings in our lives.

Seventeen months ago, we had a very sick girl on our hands.  Four phases of intense chemo treatments slammed Paige's body in such a way that there were times she needed help simply getting up from the couch.  Fast forward to this spring, when the same girl discovered she could walk the halls of her high school and even climb a flight or two of stairs without becoming completely exhausted.  She was given a key to use the school's elevator as needed, yet she pushed herself to use the stairs every day--moving a bit slower than her peers, but moving nonetheless.  Blessing counted.

Just over six months ago, Paige received radiation to her brain. Yes, her brain.  Radiation and lumbar punctures (that replace small amounts of spinal fluid with chemo) combine to form a kind of preemptive strike against any leukemia cells that may try to sneak their way into another part of the body.  Though the appointments and actual radiation doses were quick, the fatigue, headaches, and a "foggy brain" remained with Paige well beyond the two weeks of treatment.  These lingering effects threw a wrench into her first few months back at school--the girl was exhausted.  Did that stop this fighter from completing her freshman year with all A's--in rigorous Advanced Placement and Pre-Advanced Placement classes, no less?  Not on your life!  Paige rocked her state assessments and finals, finishing out the year on quite the high note.  Another blessing counted.

About a month ago, our family was asked to join five other families from our clinic on a special retreat.  A wonderful couple--whose contributions to TCH are quite high in number--welcomed us all to their 2,500-acre ranch outside San Antonio.  For three days, we unplugged from the busy-ness of clinic, chemo, and counts.  We enjoyed a variety of entertainment, ate some of the best food around, formed new friendships, and made memories that will last the rest of our lives.  Our breathtaking surroundings provided a sense of peace that every single person there really needed--and deserved--to experience.  Many, many more blessings counted.

Are there more blessings to count?  Absolutely--and I thank God for them every single day.  I am blessed to see healing being done in my daughter.  I am blessed with an incredible family that has grown even closer through this journey.  I've got to say--this is one list I don't mind getting bigger.  Take a few moments to reflect upon and give thanks for the incredible life you've been given--with all its ups and downs.  I suspect you'll find discover plenty of ways you yourself have been blessed!

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