2015: The (End of the) Year in Review

I cannot believe we are at the end of 2015.  Paige and I have racked up close to 75 days inpatient over the last 4 months--way more time than we have spent at home.  How can this be?  Looking back at the first eight months of the year, I would never in a million, bazillion years have thought we would be finishing out 2015 with a bone marrow transplant.

Paige was rolling along in the maintenance phase of her leukemia treatment.  She rejoined her fellow freshmen in January and rocked her classes.  She had an amazing summer filled with Sunshine Kids trips, Camp Periwinkle, and the Lighthouse Family Retreat.  Our family was even settling in to something close to normalcy.  When school began again in August, Paige was ready to tackle her sophomore year.  Then came Labor Day--and our lives were turned upside down once again.

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September.  A trip to the ER for what we thought might be a thyroid issue resulted in the discovery that Paige's leukemia had relapsed.  Aggressive chemo was needed ASAP.  To say we were devastated is an understatement.  I thought the original diagnosis was scary.  Relapse sent that fear into another realm altogether.  Conversations are much different.  Treatment is much harder.  It was not going to be an easy road, but Paige's medical team was determined to come up with a treatment plan that would give her the best chance to hit remission again.  A bone marrow transplant would have to follow since the relapse occurred while on treatment.  The race was on.  Paige began chemo while the search for a donor began.  I spent much of the month on autopilot, taking care of Paige but unable to do much else.  The second time around hit me so much harder--maybe because there was no sign whatsoever that the beast was back.  Maybe because my baby was finally starting to feel 'normal' again.  Whatever it was, I had a heck of a time pulling myself together.  Thankfully, Boyce was there to literally pick me up off the floor (on more than one occasion) and remind me God was still in control.  That He had not left Paige's side.  That He would give us the strength to get through this once again.
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

October.  We saw significant progress after the first round of chemo, but Paige was not yet in full remission.  The decision was made to repeat September's regimen.  She would go through 5 more days of hardcore chemotherapy.  Life outside the hospital moved on as our world was once again consumed with battling nausea, extreme fatigue, and various neuropathic issues.  Physical therapy kept those muscles moving, as some days it was difficult to simply get out of bed.  Through it all, Paige's attitude remained unchanged.  She just wanted to get it done and over with so she could move on.  The girl knows God has big plans for her life, and she was ready to once again experience life outside the walls of the hospital.  It never ceases to amaze me the strength God gives this girl to face everything that comes at her.  I want to be like her when I grow up.
I can do all things through Him who strengthens me.   
Philippians 4:13

November.  After 2 rounds of chemo, a small percentage of leukemia blasts remained in Paige's bone marrow.  Because her best chance for a full recovery hinged on getting rid of all detectable leukemia cells, the medical team decided a third round of chemo was necessary.  This would be the round of all rounds, as Paige was to receive the 'big guns' of chemo over a 6-day period.  She had received all but one of them during frontline treatment, so we had an idea of what lay in store.  These medications are tough when given on their own.  Together, they would make my girl sicker than I had seen in almost 2 years.  All she wanted to do was sleep.  All I wanted to do was cry, and I knew that wasn't going to do either of us any good.  Morning runs around the medical center gave me a chance to clear my head and get in some good, focused prayer.  It was amazing how renewed and restored I felt after those times.  Coincidence?  I think not.
Cast your cares on the Lord and He will sustain you...  Psalm 55:22

December.  A few nights after our last hospital discharge, we received word that Paige's bone marrow biopsy showed negative MRD (Minimal Residual Disease).  Simply put, the leukemia cells were no longer detectable!  Remission was achieved, a bone marrow match had been located, and we had the green light for transplant.  God was working here, no doubt.

Upon admission, Paige underwent 8 days of pre-transplant conditioning that consisted of hard chemo, total body radiation, and an antibody that they treat like chemo.  This treatment plan would wipe out the remainder of Paige's immune system to prepare her for Transplant Day.  On December 18th, Paige's 2nd 'birthday' as they say in the transplant world, the donor cells were infused through her line over about an hour's time.  It was time to wait.  And wait.  And wait.  

It is December 31st, and we are currently on Day +13 after transplant.  Paige is recovering from some of the common effects that accompany a nonexistent immune system.  She is showing signs of progress.  Healing is coming.
For I will restore health to you...   Jeremiah 30:17

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I wrote the following words last December, and they still ring true today.  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.  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.  
I wait for the Lord, my soul waits, and in His word I hope.   Psalm 130:5

My Daughter, My Hero

What's your definition of a hero?  To me, it's someone who displays great courage and determination in the face of a challenge.  Immediately coming to mind are those who patrol our streets, rescue us from danger, tend to our medical needs, and fight to protect our freedom.  Some might think of their favorite superhero, battling the villain and saving the day.  Whether we realize it or not, we encounter different kinds of heroes every day.  As for me, I need only look across our hospital room to see a hero.

For almost two years now, I have watched my daughter go through more than many people encounter in a lifetime.  Nine months of intense chemotherapy--harsh chemicals running through her body on a mission to search and destroy leukemia cells.  Bone damage and joint pain.  Headaches and fatigue.  Losing her hair not once or twice, but now four times.  The girl who was just about independent from birth suddenly needed help doing just about everything.  Clinic and hospital rooms took the place of classrooms.  Friendships formed with fellow patients as other friends moved on.  Each part of the journey presented different hills to climb.  Each time fought with everything she had.  In no time, I saw the hero emerge in her.

After Paige relapsed in September, I discovered my daughter was more than a hero--she might just be a superhero in the making.  The road back to recovery was much rockier than any she had faced thus far.  This time around there would be no set map to plan out our journey.  There would be frequent stops along the way to check progress.  There would be new combinations of drugs to attack the leukemia cells that had returned with a vengeance.  There would be remission.

Nerves?  Yes.  Anxiety?  Of course.  She is still human, after all.  Nevertheless, Paige took this latest challenge on with the same incredible courage and determination she has shown from the very beginning.  She knows God is doing a mighty work.  Around here it's one day at time--sometimes one hour at a time.  From chemo to radiation to antibody infusions, she takes the good with the bad.  She may spend a morning fighting through harsh side effects and find herself spending an evening joking around, munching on her favorite snacks, and even tackling chemistry homework.

We are now in the home stretch of pre-transplant conditioning.  Bone marrow transplant--the next leg of this journey--is just two days away.  Paige has already made the transformation from hero to superhero.  She is strong.  She is brave.  She is unstoppable.  Is there such thing as a super superhero?  Stay tuned!

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

Thankful Beyond Measure

Thanksgiving 2014.  Our family gathered together to enjoy a fabulous meal.  Paige had just begun the maintenance phase in treatment, and we were giving thanks for the abundant blessings we had received over the course of a very long year.  My beautiful girl was getting stronger and healthier with each passing day--and well on her way to a clean bill of health.

Fast forward to Thanksgiving 2015.  It has now been almost three months since her relapse, and Paige just completed a very rough 6-day block of chemotherapy.  She has battled severe headaches that called for IV pain relievers.  Nausea requiring a delicate balance of three medications.  Mouth sores that make swallowing, chewing--even talking--painful.  It doesn't stop there.  We are now on alert as her counts go down, a necessary part of the whole process.  Our family will still gather together, but Paige and I will join them via FaceTime rather than face-to-face.  She and I will still enjoy some home-cooked holiday yumminess--just a little later in the day than the rest of our family.  Yes, Turkey Day this year is quite a different scene, but still we give thanks.

From Paige's initial diagnosis to her recent relapse, this journey continues to teach me what it means to be truly, wholly thankful.   Not for just one day.  Not for just one month.  I'm talking every single day.  I am thankful.

Thankful for God's love, mercy, and abundant grace.  He is my rock, my fortress, my refuge.

Thankful for a top-notch medical team that works diligently to provide the best care possible--not just for my daughter, but for all the kiddos here.  They do a pretty incredible job caring for the parents, too!

Thankful for an amazing family that continues to grow in strength and faith.  They take care of each other as well as the 'extras' so I can focus on Paige.

Thankful for friends we have made along this journey, families whose precious children are fighting similar battles.  We cheer for them, pray for them, and have all kinds of love for them.

Thankful for my daughter and her fighting spirit.  Paige is ready to annihilate this cancer mess once and for all.  She knows we have a rough road ahead and continues to press on with everything she has.

Thankful for time together.  At home or in a hospital room--it doesn't matter where.  Playing a game or watching television in silence because her mouth hurts so badly--it doesn't matter what.  All that matters is that we are together.  For that I am thankful.

Before the busy holiday season kicks into full swing, take some time to give thanks for the blessings in your life.  Give thanks during the good times.  Give thanks during the not-so-good times.  In all things give thanks.

Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.   1 Thessalonians 5:16-18

Are We There Yet?

Are we there yet?  Anyone who's ever taken a car trip has heard--or spoken--those words.  We're all about getting to the destination.  At least, that's been my mindset lately.  First round of chemo after relapse--Are we in remission yet?  Second round--I know we're closer, but are we in remission now?  Are we there yet?!?  Think back to those car trips.  Each "No, not yet" reply gets more and more frustrating.  You just want to get there--wherever there may be.

For our family these days, there is remission.  There is getting to transplant.  There is cell engraftment.  There is passing the all-important 100-day mark.  As you might guess, we have many stops along the way as we travel toward the ultimate destination--Paige being healthy again.

We aren't there yet.  Paige's bone marrow biopsy last week still showed a slight percentage of leukemia blasts.  It was less than 1%, but the team wants it basically undetectable before transplant.  They felt the best course of action was to hit those last pesky cells with some hard chemo.  Over the course of 6 days, Paige will receive 5 drugs (some multiple times) that by themselves are rough.  She is getting them in one big block.  Needless to say, our girl is feeling pretty crummy and has spent much of the last 24 hours in bed--and we are only on Day 2.  We usually spend our inpatient days on schoolwork, games, crafts, and visiting with other friends on our floor.  We aren't there yet.

Once the block is finished, Paige's counts will bottom out yet again.  We will stay here through count recovery, which could very well mean we won't return home before transplant.  Our family is still trying to process the fact we are going to be separated longer than we anticipated, but we are keeping that end destination in our sights.  We are aiming for many more holidays together, so we will get through this season the best we can.

No, we aren't there yet--but we are on our way.  There are sunny days, and there are cloudy days.  There are stops we plan, and there are those we don't.  The journey is tough, but we stay strong in faith as we travel this road God has laid out for us.  He has a plan for Paige, a plan for our family.  We just have to wait---because we're not there yet.

The Lord is good to those who wait for Him, to the soul who seeks Him.   Lamentations 3:25

Construction Zone

Is it just me, or does it seem like there are construction signs everywhere?  Take a short drive--you'll see what I mean.  They notify us of impending improvements and warn us of dangerous conditions.  It almost makes me laugh to think how closely that resembles daily life for us these days.  Those orange and yellow signs are around every corner.

Body Under Construction.  Over the next several months, Paige's body will undergo major renovations.  Once admitted for transplant in early December, she will face several days of conditioning that will involve more high-dose chemo as well as full-body radiation.  White blood cells, platelets--basically everything in her immune system--will be wiped out to clear space for the stem cells of the donor marrow.  After the infusion of cells, better known as transplant, we wait.  And wait.  And wait.  Once the marrow engrafts, Paige will have a brand new immune system.  We will have to take all kinds of precautions to keep her healthy and safe while her body adjusts to this 'extreme makeover.'

Home Improvements.  We are blessed to live within relatively short driving distance to the medical center, which means that Paige will be able to spend time recovering at home after she is discharged.  Our house is not ancient by any means--we moved in when Paige was a toddler.  That said, there were a few things that needed some attention given our delicate situation.  Paige and her baby immune system will be highly sensitive to the smallest of things, so we have to make sure everything is just right for her return home sometime in January.  Thanks to the kindness of friends and family, these issues were taken care of in plenty of time.

Reinforcing the Foundation.  Our faith and trust in God has given this family a solid foundation.  The work He is doing in Paige--in all of us, for that matter---has strengthened us in ways we never could have imagined.  We may struggle with the 'whys' and wrestle with fears over the unknown, but those things will not overtake us.  We will not be shaken.  I keep going back to something from our pastor's message last Sunday:

"If it's good, blessed be the name of the Lord.

If it's not so good, blessed be the name of the Lord--

Because in the end, God wins."

God is at work here.  As we prepare for this time of 'reconstruction,' He is here.  Providing the hardhats and safety equipment.  Giving us strength and unexplainable peace.  He is here, and we are incredibly thankful.  Blessed be the name of the Lord.

Blessed is the man who trusts in the Lord, whose trust is the Lord.   
Jeremiah 17:7

The ABC's of BMT

I've been an educator for a long time, and I thought we had a ton of acronyms.  We've learned so many new ones on this journey, I'm thinking of making an ABC book just for them.  BMT--Bone Marrow Transplant--is the latest to add to our medical vocabulary.  Yesterday Boyce and I attended a class that gave us a general overview of the whole process.

Here's the condensed version:

1. Paige will have a PICC line placed.  Similar to the port she has in her chest, this double-lumen (fancy way of saying 2 access points) line will be inserted in her arm.  She had one when treatment first started last year and was not a fan whatsoever, but it is necessary for the many medications she will receive during her stay in the BMT unit.  Hopefully she will only have it a few months.
2. She will undergo a conditioning regimen prior to transplant.  This will consist of different types of chemo, antivirals, and antibacterials--given over several days--that will completely wipe out her immune system.  Chemotherapy throughout her leukemia treatment mostly hit the white cells--this will hit everything.  
3. The day of transplant--Day 0--was described as somewhat anti-climactic.  It is essentially an infusion of the stem cells through her line.  Then we wait.  And wait.  And wait.
4. The projected time inpatient after transplant is 4 to 6 weeks as we wait for engraftment and recovery from everything that goes along with it.  The first 100 days after transplant are crucial--and will have us under all kinds of restrictions with diet, social outings, etc.

Transplant will be a long and challenging road, but it's one we will gladly travel to get our girl healthy again.  Now more than ever, we must remind ourselves--on a daily basis--to take it one step at a time.  In the next couple of weeks we will meet the bone marrow doctor and get a more detailed look at the plan they are developing for Paige.

In the meantime, Paige and I remain here Hotel TCH.  She completed another round of hardcore chemo last week, and we are now waiting as it kicks in and sends her counts back down.  We'll be here on fever watch (and probably a transfusion or two--or more) as counts trend back up to a point it is safe to leave.  It looks like we should have a short break before our transplant admission--depending on count recovery as well as space on the BMT floor.

I know I may sound like a broken record, but Paige continues to amaze me.  Would she rather be somewhere else?  Of course, but she pushes through every bit of chemo, nausea, and pain like nothing I've ever seen.  She is a lady on a mission with a "let's get this done" attitude.  God is doing such a work in her--physically, mentally, and spiritually.  I may just have to come up with an ABC book all about the miracle that is my beautiful daughter--it'd be a best seller, for sure!

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

PET Scan Pit Stop

Paige's PET scan this week provided our first real experience with scan anxiety, or scanxiety.  She has received multiple scans over the course of our journey--from x-ray to CT to MRI.  However, this one had us on pins and needles from start to finish.  Maybe because last week's CT scan still showed something there, and doctors needed a better look.  Maybe because we were newbies with this particular scan.  Maybe because we were just plain scared.  Whatever the reason, it was time to get those prayers going.  Peace and calm assurance were needed--STAT.

We set out for the hospital before dawn that day with a car so loaded there was barely room for its passengers.  The scan was scheduled first, with an office visit and chemo admission to follow.  We were directed to the nuclear radiology area, where they led us to our 'holding cell,' a room with a lead door controlled by a wall panel.  After Paige's port was accessed, radioactive glucose was infused through the line--yes, radioactive.  Its mission is to seek out active disease in the body, which lights up on the scan.  It was delivered in a lead box, the syringe was encased in lead--and it was being pushed into my daughter's line.  This was one of those moments where that peace thing came in really handy.

After the infusion, Paige had to lie still for about an hour to give the glucose time to work its way through her body.  Only one of us could be back there with her, so Boyce stayed in the waiting area while Paige and I hung out in our 'cell.'  A panel of lead, complete with a window, was wheeled  between us as we watched TV and waited to be taken back for the scan.  When the time came, I was allowed in that room with Paige as well--as long as I wore a lead apron for the duration of the scan.  I tried to take her mind off things as much as I could by playing music on my phone.

The noise of the machine, while not quite as loud as those used for MRIs,  still made it somewhat difficult for her to hear.  I followed her as the table moved through the machine, getting the music as close to her as I could.  That was yet another one of those times peace took over.  She likes to know I am right there--even when she can't see me.  Hmmm...that sounds really familiar.  I like to feel the peace and presence of God--even when I can't see it.  

Later that morning, as we waited for Paige's admissions paperwork to be processed, we found out the results of the scan.  It showed no evidence of disease--the chest mass is gone!  One obstacle down. Time to attack those last cancer blasts left in her bone marrow.  This is a tough journey, and peace can sometimes be hard to find.  It doesn't mean God isn't right there--He gave us His promise to never leave or forsake us.  We'll continue pressing on through those detours and pit stops, knowing there is a greater purpose.  It may not yet be in our line of sight, but we will get there.    

Be strong and courageous.  Do not fear or be in dread of them, for it the Lord your God who goes with you.  He will not leave you or forsake you.   Deuteronomy 31:6 

One Month Later...

Today marks one month since our world was turned upside-down with yet another cancer diagnosis.  Twenty months into treatment, Paige's leukemia came back with a vengeance.  A new mass had silently begun taking over her chest while cancer blasts multiplied in her bone marrow.  Fast forward 30 days.  We have not quite hit remission, but there has been significant progress.  The mass is much smaller.  The blasts are much less in number.  And I am thankful.

After what became a small battle to get Paige comfortable leaving the hospital, we came home for a break before the next round of chemo.  Not knowing how long our next stay might be, we are making the most of this much-needed time of rest.  We have enjoyed meals and game time at home--with all four of us under one roof.  Paige and I fit in some girl time as well.  We had our nails done, attended a Sunshine Kids event, and met up with friends for some art therapy.  Yes, there have been clinic visits sprinkled in--mostly to check counts--but it sure is nice to come home.  And I am thankful.

This week has seen less fun than last.  A bone marrow aspirate, lumbar puncture, and CT scan were performed to see where we stood progress-wise.  Paige has a history of spinal headaches, so we have a pretty decent game plan each time one of these procedures comes around--or so we thought.  For the past two days, Paige has experienced severe headaches she described as "so much pressure it feels like my head is going to explode."  These headaches were accompanied by extreme nausea, causing her to get so sick after today's scan that we headed straight up to clinic.  Our girl was in pretty bad shape--but IV medications for nausea and four hours of fluids provided enough relief to get us back home this evening.  She was able to keep food down tonight and is now resting.  And I am thankful.

Counts are recovering nicely, and it looks like our next hospital admission will begin on Monday.  Paige will once again receive five days of hardcore chemotherapy--a repeat of last month's treatment. The goal is to hit remission this time around and go to bone marrow transplant a few weeks thereafter.  There is so much to process with this detour that we have no choice but to take things one day at a time.  We all still wrestle with the "why" of all this--especially Paige.  "Why, Mom?  Why did this have to happen to me again?"  This was part of our conversation before prayers last night.  I simply told her what was on my heart--that I don't know why it happened to begin with.  That God must have some insanely huge plan for her life, one that we can't even begin to imagine--but one that we must trust even when we just don't get it.  That she is not fighting this alone.  This girl has an army of prayer warriors standing with her, a family that loves her more than she will ever know, and a mighty God who will never leave her.  And we are so very thankful.

Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.   1 Thessalonians 5:18  

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

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

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.