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

Freaky Friday

Our family has seen plenty of ups and downs along this journey.  We've sailed calm waters and fought to stay on our feet through raging winds.  Doing life these days means striving to be as 'normal' as possible while still preparing to expect the unexpected.  We know things can change in the blink of an eye, but maybe we'd forgotten.  Maybe we'd gotten a little too comfortable.  Well, we received quite the reminder a few days ago.

Friday marked the completion of Paige's first week of full school days since her diagnosis.  She was exhausted at the end of each day, of course, but the girl didn't give up.  She fought through feelings of physical illness from recent medication adjustments.  She battled nerves over the unknown--classes she had completed work for, just not yet attended.  With her usual grace, Paige handled everything beautifully.  It was definitely one of the 'ups' of our journey.

Though she was tired at the end of the week, Paige was excited to be leaving Friday evening to attend a teen camp for patients seen in various clinics at Texas Children's Hospital--oncology, cardiac, and a few others.  There would be plenty of medical staff there to attend to any emergencies, and Paige was finally at a place in her treatment where she was okay being away for a couple of nights--especially considering all the fun that was to be had.  After a quick check-in, she was ready to roll--even if Mom was having slight separation anxiety.  Paige would be okay, after all--and she really needed this time of fun and fellowship.  Another 'up.'

Younger brother Jeremy was quite excited to be "the only child for two nights" (his words).  He made the dinner selection for the evening, and I had plans for a "Mom & J" day while Boyce worked on Saturday.  We were just settling in to watch some TV Friday night when the call came.  Our weekend plans were about to change in a big way--one of those 'downs' was about to hit hard.

Paige's bus had just pulled into camp when she began experiencing numbness and tingling in her hands and feet.  Shortly thereafter, her hands cramped up as her arms pulled toward her chest in an involuntary manner.  As she tried to tell a fellow camper what was going on, she found her speech slurring and words hard to find.  The medical staff immediately went to work assessing the problem, checking vitals, and making sure she was stable.  They determined it wasn't necessary to go to the hospital close to camp--but they were bringing her back to Houston so doctors at TCH could check things out and run whatever tests needed to figure out what happened.

The nurse practitioner, a fabulous lady we know and trust completely, assured me Paige was okay to make the trip.  That she would get her to the ER safe and sound.  "Amy, she's okay.  She is okay."  I hung up the phone--I think.  I may have dropped it.  My voice shaky, my whole body trembling, I relayed the story to Boyce.  For a brief second it felt like we were transported back to the neurotoxicity reaction Paige experienced this time last year.  Except she was two hours away.

All of a sudden, I was hit with an overwhelming panic.  I couldn't breathe, couldn't stop crying--couldn't pick myself up off the floor.  Weren't we supposed to be past this?  I wasn't sure I could go back to this place again.  Boyce--and Jeremy--quickly sprung into action to get me calmed down.  I had to be back 'in the zone' when I got to Paige.  While Boyce was helping me get the breathing thing under control, Jeremy was gathering his things to take to Grandma's (can you tell he's done this before?) and grabbing Paige some clothes for the hospital.  By the time Grandpa arrived to pick up Jeremy, I had returned to my 'normal' self--if there is such a thing anymore.  I was also able to talk to Paige on the phone.  Hearing her speaking clearly and telling me she was okay (just tired) was just was the doctor ordered.

It didn't change the fact that two hours is a really long time.  I spent much of that time calling on prayer partners to lift my girl--and lift her high.  The rest of the wait was split between praying and reminding myself to breathe.  As soon as the next call came, we were out the door.

Usually I'm the one who has a bit of a lead foot.  Not that night.  Boyce was on a mission to get to his baby girl as soon as he could.  By the time we arrived at the hospital, Paige was already being moved to a room in the ER.  Labs and an MRI would be done before we even thought about going home.  Since the scan wouldn't be done until the next morning, Paige was admitted and moved to a room upstairs about 2 am.  No sooner had she fallen asleep than a team of doctors came in to conduct another neuro assessment.  My girl was not pleased, but she understood they were trying to help her.  She was back to sleep in no time.

Before Paige had a chance to eat breakfast, we were on our way down for the MRI.  It's been a while since she's had one--and though one of us is always there with her, it's still a bit nerve-wracking for her.  Paige selected a movie to watch (at TCH they use movie goggles to help the kiddos focus on something besides the loud, scary machine), and it was go time.  She held the emergency 'squeezer' in one hand and my hand in her other.  Many, many prayers later, the scan was over--and the wait for answers continued.

When doctors came to see us just a couple hours later, they said Paige's labs looked good, as did the MRI.  There was no sign of bleeding in the brain (didn't realize they might find that, so I had to move past that very quickly)--in fact, the scan seemed to show improvement since the one taken after last year's reaction.  They are thinking the episode was a reaction to one of her medications--one she has taken for more than a year without incident.  It's actually very rare to experience a reaction to this particular medication, as there is only one documented case.  Totally a Paige thing--always wanting to be different.

As of now, we just keep on keeping on.  If it happens again, something will have to change.  We are praying it's just a fluke.  We have a follow-up with Neurology in a couple of weeks, and an EEG will be scheduled in the near future.  Gotta make sure those brain waves are doing what they're supposed to.

All in all, Paige is doing well.  She's tired--and still pretty freaked out, as you might expect.  She also went right back to school yesterday without missing a beat.  Pretty marvelous Monday, I'd say.  There's one of those 'ups' again.

Friday may have been one of those terrible, horrible, no-good, very bad days--but that's when we have to remind ourselves that God is good all the time.  He never leaves His people.  He gives us strength when we have none.  Peace and hope when we are wrecked with anxiety and fear.  Though the situation this weekend was wrought with the unknown, our family remained united in strength.  United in hope.  United in faith that God was still working that amazing healing thing He does so very well.

Sunshine, Hope, & Pure Joy

I have made it a point along this journey to share stories about the miracle going on in our family as Paige battles the monster that is childhood cancer.  In 15 months, I have witnessed strength and courage as she faced (and continues to face) her treatments head-on, as she walked through the doors of her school for the first time in a year, as she wondered how (and even if) she would find acceptance in a world that seemed so far away from her new reality.  Through it all, Paige has displayed an unwavering faith that only seems to grow as we move along this path.  She knows God loves her.  She knows He is healing her.

The fact remains that, since her January 2014 leukemia diagnosis, Paige has missed out on things many young ladies her age take for granted.  Hanging out with friends.  Opening night of a favorite movie.  Shopping at the mall.  Children and young adults going through cancer treatments are many times too ill--or their immune systems are simply not strong enough--to participate in activities with their peers.  Crowds--and the germs they contain--pose threats healthy people can't begin to understand.  When the slightest temperature lands you in the hospital for at least 3 days, it becomes something you just don't want to chance.  Movies are viewed at home--or in the theater at off-peak times.  Same with shopping--I can't tell you how many times Paige and I scheduled our quick outings to make sure we were in and out before the crowds hit.

Even though entertainment and outing times found her joined at the hip with good old Mom, Paige always managed to see the best in the situation.  Late morning movies sometimes meant we had the whole place to ourselves.  Some days just getting out of the house was a blessing in and of itself.  When you're cooped up for days on end, a simple ride to Sonic can be an adventure.  And then--out of the blue one day--there's sunshine.  The Sunshine Kids Foundation, to be exact.

Their mission statement says it all.  They work to add quality of life to children with cancer by providing them with exciting, positive group activities so they can have fun and celebrate life.  And celebrate they do.  Teen movie days, bowling nights, and Rockets games.  Children's trips to Marvel Live and Disney on Ice.  Seasonal parties at The Sunshine Kids House.  No matter the event, the outcome is always the same.  Smiles.  Laughter.  Pure Joy.

A joyful heart is good
medicine...Proverbs 17:22

You see, at these events, nobody really talks cancer.  Unless the kiddos ask each other about their diagnosis, there are other conversations going on--about what's going on at their schools, who is going to the next event, or the amazing food that's always a part of the celebrations.  There is nobody staring at them--unless someone is busting some serious moves on the dance floor.  Worries about hair--or lack thereof--fade away, if only for a few hours.  Conversations begin, new friends are made, and we come away with happy hearts--and the hope that one day childhood cancer will be a very distant memory for all of us.

Acceptance.  Friendship.  Joyful hearts.  Who doesn't need a little sunshine in their life?  These amazing kids deserve nothing less.

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

Easter Blessings

Easter Sunday.  A time of celebrating the resurrection of Jesus Christ.  Because He loved us so very much, He paid the ultimate price for our sin and rose again three days later.  He is my Savior, my Redeemer, my Hope.

Last year at this time, I found myself reminiscing about Easter traditions--from new dresses and pictures with the Easter Bunny to egg hunts and chocolate bunnies being devoured.  Though these activities always brought plenty of smiles, they never took away from our primary cause for celebration--Jesus' resurrection.  Hymns of praise and sermons delivering messages of God's unfailing love--now there's a reason to celebrate!

Last year at this time, there would be no Easter morning service for us.  Paige was getting ready to begin a new phase of chemotherapy, and her counts were too low to be among big crowds.  She did manage to take part in decorating our traditional bunny cake, and we were able to enjoy Easter dinner at her grandma's house.  An egg hunt even helped complete the day.  At that point, Paige was just three months in on the fight of her life--but she radiated hope that day.  In fact, she still does.

This year, things are different--in a good way.  Now almost 15 months in on this journey, our family received a special gift this Easter Sunday.  We were able--no, make that completely, totally blessed--to attend church together this morning.  Worshiping together.  Hearing the message together.  Kind of an awesome thing.

After church, it was off to Grandma's house for lunch and an indoor egg hunt (thanks to some rainy weather).  The bunny cake dessert tradition continued, sporting an awareness theme this year.  Paige and Jeremy provided plenty of laughs as they entertained us with stories and unique takes on life.  Hearts and bellies full, we headed home for a little game time and finished out the evening with the A.D. series premiere.

Last year, this year--and every second I have breath--I am thankful for God's amazing grace, mercy, and unfailing love.  I am thankful for the 14-year-old miracle asleep in the other room who continues to show she is living proof of the hope we have in Jesus.  What an incredible blessing--today and every day.

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

Show & Tell, Part Two

One more quick share...a short, insightful piece authored by my girl for a school writing assignment.  I love reading her work.

     Cancer. It can change everything in a heartbeat. One minute your biggest worry is what color to paint your nails, and the next you are dealing with side effects from an intense round of chemo. A cancer diagnosis can affect the body both physically and mentally in ways you would never imagine.
     On the physical side, treatment can damage your bones. Steroids are commonly used in the process, and though they help fight the disease, they also cause bones to become weaker and narrower. The many toxins in chemotherapy can make you nauseous and even violently ill. On the bright side, after all the suffering endured during treatment, strength finally builds back up. The whole process is like a cycle, "The Cancer Cycle."
     Mentally, chemo makes your brain slower, a phenomenon commonly known as "chemo brain." Furthermore, there is always going to be that one part of you that thinks, "What happens if I relapse?" The feeling of this question is pushed aside when you realize what's truly important. I, for one, learned to put everything into God's gracious hands.
     Bad things will happen in life, but that doesn't mean they have to defeat you. A life changing event like a cancer diagnosis is not the end. Though it affects your body both physically and mentally, the lessons you learn are priceless.