Day +100 - Still Joyful in Hope

Day +100.  It has now been 100 days since our precious Paige received a precious gift--literally the gift of life--in the form of a bone marrow transplant.  The complex, intense nature of transplant makes the first 100 days extremely crucial.  It in no way marks the end of the recovery process.  It's just a really good feeling to get to that important 'rest stop' on this journey--though I can't say we rest all that much.  This is a bumpy road we travel, and I am increasingly thankful for God's mercies we experience along the way.

Faith.  

Now faith is the assurance of things hoped for, the conviction of things not seen.   Hebrews 11:1

This journey is a difficult one.  From the beginning (Paige's initial diagnosis), we knew there were no guarantees.  There was not a real cure.  Our prayer was--and still is--remission.  Remission now, and remission 10, 20, even 50 years from now.  There are good days--days full of laughter (usually at something her brother is doing), chowing down on a favorite food she finally craves again, and just plain feeling good.  There are tough days--fighting headaches from necessary infusions, battling bone pain, and dealing with very slow recovery from the shortest of procedures.  Yet there is not one day without faith.  Some days that faith feels gigantic, and some days it feels as small as a mustard seed--but it is always there.  Faith in God's healing power.  Faith in His plan for our family.  Faith that He reigns above it all.

Joy.
My lips will shout for joy when I sing praises to you...   Psalm 71:23

We have plenty of reasons to be joyful around here.  It may not always seem that way--especially when we are dealing with the aftermath of treatment Paige has received over the last 2+ years.  Some issues are simply a pain, and some actually cause pain.  Nevertheless, there is always a reason to be thankful, and there is joy to be found in every day.  Yes, it has come (more than one time) as great news from a medical team.  Today it comes from reaching the 100-day milestone.  However, there are so many other times it appears.  Joy shows up in my beautiful girl's smile.  It shows up in our gratitude in simply being home.  It comes in the form of decorating the annual bunny cake with Grandma--at our house, of course, because Paige isn't yet allowed to venture out.  We find the joy, and we thank the God who gave us that joy.  

Hope.

But if we hope for what we do not see, we wait...with patience.   Romans 8:25
But I will hope continually and will praise you yet more and more.   Psalm 71:14

It's an amazing gift, that hope thing.  Hope keeps us grounded and focused.  Hope helps us press on through the struggles of life.  God has plans for us, and those plans give us hope and a future.  Of course, times get tough.  Of course we are going to struggle.  Our family can attest to that.  We have seen some choppy waters, especially over the last six months.  That's when it became even more important to hold on to the tiniest glimpse of hope.  Romans 12:12, the verse by which we do life around here, tells us to "be joyful in hope."  And that we will.  Hope that our sweet girl's pain will subside and her bones will strengthen and be restored.   Hope that Paige will be healed from the top of her head to the tips of her toes.  It takes time, and it takes (a whole lot of) patience.  But I hope and believe with all my heart that healing is coming for this child.

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Easter is a time to celebrate our risen Savior.  Because He lives, we can face tomorrow.  There is this amazing hope He gives us with each new day.  Today, as Paige reaches the 100-day milestone, I get to see some of that hope sitting right across the room from me.  Pretty incredible gift, don't you think?

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.   Romans 15:13

Mom's Late-Night Musings

Six months.  It's been almost six months since we were forced to take a detour on our journey.  Since our lives were turned upside-down yet again.  Since we were told our beautiful girl would have to fight for her life a second time.  It's difficult enough to read back over some of the things I've written along the way, but it's been absolutely gut-wrenching to have to live through some of them.  The last week has been a time of reflection and decision-making for our family, so I figured it was a good time to share some of the things that have been on this momma's heart as of late.

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My daughter's struggles.  Paige is fifteen.  Fifteen--and at this point in her recovery cannot go anywhere but home or clinic.  While her peers are busy being 'normal' teenagers, Paige hasn't yet had that privilege.  Originally diagnosed at the age of thirteen, she has spent her teenage years so far battling the beast called childhood cancer.  Her time has been spent in hospitals, not in the hallways of her school.  Her circle of friends is much smaller, now mainly consisting of those fighting battles similar to hers.  I have seen the hurt in her eyes when people who said they'd visit never did.  I have watched her look through photos of school events and listened as she wished aloud she could be part of those things again.

Just the other night, my girl held back tears as she told me she was tired of being sick, of her body hurting so much, of being "damaged."  Damaged.  It definitely isn't her usual state of mind, but that's where she was at that moment.  I'm always trying to get her to let me know what she's thinking about all of this, even though it breaks my heart sometimes.  She needs to vent--we all do.  Thankfully, God seems to give me the right words exactly when I need them.  I immediately thought of the Mercy Me song, "Flawless," and quoted some of the lyrics:

No matter the bumps, No matter the bruises

No matter the scars, Still the truth is

The cross has made you flawless

I went on to remind her that God doesn't see her as damaged--not in the least.  She is a living, breathing miracle, and we pray every day for complete restoration of her health.  I may not know the plans God has for her life, but I know they must be big considering the mighty work He is doing here.

Our family's trials.  This is a long road.  We knew we were in for a bumpy ride when Paige was first diagnosed, but we made it through the first leukemia battle with everyone still standing.  Battle number two began with a sneak attack and necessitated immediate action, requiring our family to be separated for weeks at a time.  Transplant and subsequent re-admissions kept us separated even longer.  We were reunited a few weeks ago and are still working out the kinks of being under one roof again.  It's been a little rough at times, but I wouldn't trade it for anything.

Not only did the separations make it tough, having our income cut in half yet again makes things even tougher.  I was on unpaid leave for almost a year following Paige's initial diagnosis and actually returned for a few months last year.  My most recent leave of absence has expired, making it necessary to resign from my job.  Paige is still at a point where she requires round-the-clock care.  From IV medication administrations to help simply getting her from one room to another, the days are pretty full around here.  Things were tight and have only gotten tighter, yet God has met our needs every step of the way--and I have no doubt He will continue to do so.  His timing is always perfect.

Connections with medical teams.  Once Paige hit remission and was a go for transplant, we were "traded" to another team.  To say it was difficult leaving the comfort of the oncology floor after the relationships we'd formed there is quite the understatement.  Our family came to love and admire every single member of our team--from our oncologist, nurse practitioner, and social worker to the nurses and patient care assistants.  We were with these people the better part of two years, and I have a hunch they love my girlie just as much as she loves them.  In fact, they continue to be part of our TCH family even now that we are officially part of the BMT world.

Though we joked with our oncology team about "ditching" us, we couldn't be happier with our BMT team.  They monitor every single aspect of the transplant process, they are extremely thorough when reviewing counts and levels, and they are fantastic with individualizing the treatment regimens of their patients.  This whole group is pretty wonderful too--from the inpatient staff who got to know us very well over the course of a couple months to the clinic staff a few times each week.  I can't begin to say how thankful I am for these people who genuinely care about the kiddos and their families.

Connections with other families.  We have had the privilege of getting to know other families who were themselves thrown into the world of childhood cancer and/or bone marrow transplant.  For many of us, it doesn't take long to strike up conversations about our children's battles.  While there are often similarities, every child's fight really is unique.  Allergic reactions.  Side effects both temporary and long-term.  Chemo working.  Chemo not working.  On the same note, families face different struggles.  Some find themselves moving from their hometowns--whether temporarily or permanently--to be closer to their children's treatment center.  Single parents juggle work and treatment schedules.  This world sees a family dynamic second to none: No matter our own circumstances, we are there for each other--to listen, to cry, and to just be.

Our challenges may differ, but our goals are the same.  We want our kiddos to be healthy, happy, and whole again.  We want them to grow up to be nurses, law enforcement officers, princesses, astronauts--whatever they want to be.  They just need the chance to grow up--outside the walls of a hospital, preferably.  They deserve nothing less.

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Lots on the mind.  Even more on my heart.  No wonder sleep doesn't come easily these days.  I am looking forward to the day when Paige's health is fully restored.  When we can look back at the struggles and continue to be in awe of how God brought us through every single one.  That day will come--I just know it.

"...In the world you will have tribulation.  But take heart; I have overcome the world."   John 16:33

Forever Aware, Forever Changed

February 15.  International Childhood Cancer Day.  A worldwide campaign to raise awareness about childhood cancer.  A time to bring to the forefront the issues and challenges faced every single day--things like equity in treatment, better access to care, and safer methods of restoring the health of these precious kiddos.  A way to show support for the far too many children and families affected by this monstrous disease.

Before cancer came after our family, I was aware--or so I thought.  I knew it was out there.  I had heard of local children fighting it.  I felt for the families affected by it.  But that was it.  I had no clue what it was really like to be completely, totally, painstakingly aware.  That all changed on January 10, 2014.

Paige's leukemia diagnosis rocked our world.  In one fell swoop it changed our priorities.  It changed our mindset.  It changed our lives forever.  I figured on this day of awareness I would offer a peek at  just how aware we are these days of the monster known as childhood cancer.

Paige.  Our independent-from-birth daughter now depends on us more than ever.  It was enough that chemo made her sick.  As a matter of fact, chemotherapy after relapse had her the sickest I've seen.  Now just under 60 days after transplant, we are dealing with some of the more long-term effects.  Bone damage caused by some of the drugs used in treatment is now so severe, she has to wear walking boots in order to handle any kind of weight on her feet.  She can manage short distances in the house, but anything more requires the use of a wheelchair.  This literally happened overnight.  One day, she was walking around just fine.  The next, not so much.  Her bones have taken such a hit it seems like each day there's a new ache or pain.  She made the comment tonight that she is 15 and has the body of a 99-year-old.  My girl puts up a strong front, but I know she would love to experience some semblance of 'normal' teenage life.  

Jeremy.  Paige's 12-year-old brother has been nothing short of incredible.  He likes helping take care of his sister and understands why we have had to make some very big changes around here.  The last 5 months he has spent more time at his grandma's house than our own.  He loves my mom, and she takes great care of him--but being away from us so much was beginning to take its toll on him as well.  Worries and nightmares entered the picture, sabotaging any chance for real rest time.  Getting everyone back under one roof has been quite the adjustment, but I see my kiddo getting a little more settled each day.

Boyce.  Our family's only breadwinner right now, this man has run himself ragged taking care of things when Paige and I were spending extended time at Hotel TCH.  There were days he would take Jeremy to school on the other side of town, make a trip to the hospital for a quick visit and laundry drop-off, and then tackle a full day (or night) at work.  He repeated that cycle every time it was needed--which was quite a bit.  With Jeremy at my mom's so much, Boyce spent many nights home alone.  I can't imagine how this affected him.  Silence can be great sometimes, but in situations like ours it can be downright deafening.

Amy.   After many all-nighters on fever watch (among other things), I have come to the conclusion that nights terrify me these days.  Our nightly routine that ends with prayers and goodnight hugs sends the kiddos to Dreamland and me to Wide Awakeville.  When I do actually doze off, it's for minutes at a time--there is no real sleep.  It could be a combination of all sorts of things, and I'm sure as things settle down that I will too.  I hope.  

Hope.  That's the key.  No matter how aware we are, no matter how hard cancer has tried to attack us, we have hope.  For over two years now, I have shared how our faith in God has brought us through the toughest of days.  Through the devastation of a cancer diagnosis, intense chemotherapy, and its scary side effects.  Through relapse and its uncertainties.  Through bone marrow transplant and the fight to get our daughter healthy again.  That faith has not been shaken.  I know He has never left us--not for a second.

This journey has changed our family in so many ways.  It could quite honestly have ripped us apart, but it's actually done the opposite.  Our bond is stronger.  Our faith is stronger.  We are forever changed.

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

The Roller Coaster Ride Continues

Today marks 50 days since Paige's bone marrow transplant, and we are spending it in an all-too familiar place these days--the BMT Inpatient Unit.  Since early December, we have been on a roller coaster wilder than anything I've ever seen in an amusement park.  As a matter of fact, I can just about place the events of the last several months into their own 'coaster categories.'

Uphill Climb.  As the car makes its way up, up, up those steep inclines, riders feel a resistance of gravity as they are pushed back into the seats.  This is accompanied by a sort of nervous anticipation of what lies ahead.  What a perfect analogy for our journey from relapse to a second remission.  The out-of-nowhere repeat attack on her body was so aggressive, Paige had no choice but to slowly make her way up that steep hill that might as well have been a mountain.  Each round of chemo made her feel as though she was being pushed--or shoved--into her seat for this ride she just wanted to be over.  Each round hit my girl harder and harder.  Each round was followed by nervous--at times, frantic--anticipation of what the biopsies would show.  Would there be progress?  What was on the other side of this hill?

Big Drops.  Riders reach the peak of the roller coaster and quickly descend into a 'controlled' freefall, often experiencing a floating sensation that either calls them back for more or sends them running in the opposite direction.  We made it to the top of the hill--a much steeper climb the second time around--when Paige reached remission once again.  It was a quick plunge into the world of Bone Marrow Transplant.  Multiple tests and studies to ensure her body was able to handle the process.  So much blood drawn it would put the average adult on the floor.  A whole new medical team to care for her from this point on.  By the time we were admitted for pre-transplant chemo and radiation, that freefall sensation seemed to be part of our daily life.

Loops.  Riders hold on for dear life as their car progresses up a continuously upward-sloping piece of the track that forms a complete circle.  At the upper-most section of the loop, riders are completely upside-down, turned topsy-turvy at a high rate of speed.   Once Paige received her stem cells on Day Zero--her 're-birthday'--it was time to head back uphill as we waited for engraftment.  The first few days saw a slow climb upward, and then the craziness began.  Paige fought one effect after another: fever, mucositis, digestive tract issues, and extreme fatigue to name a few.  Numbers would start to improve, then go back down, then improve once again.  There were days it felt like we were stuck at the top of that loop--hanging upside-down and holding on as tight as we could.

Thankfully, Paige engrafted within the predicted window of time.  Her blood and bone marrow are now 100% donor, giving her body a much better chance at making healthy cells.  The biopsy and lumbar puncture around Day +30 were negative for leukemia blasts.  The blessing of those incredible results kept us 'buckled in' on days when it seemed like we might just fall off the ride.

Corkscrews.  Similar to a loop but 'stretched' with entrance and exit points further away from each other, this feature literally sends riders into a tailspin.  I would say our world since the initial BMT discharge in mid-January has seen more of these than any other feature described thus far.  In fact, it seems like we've been in one very long tailspin.  Here's just a glimpse at the events of the last 25 days:
     Re-admission for fever less than 48 hours after discharge.  A virus and Graft vs. Host Disease.  Discovery of bone damage in ankle and tibia of each leg--gotta love chemo and steroids.  Obtaining and getting used to devices that will help mobility as we hope and pray these issues resolve.  Another inpatient stay thanks to another fever.  Both lumens (access points) on PICC line decide to stop working--thankfully this was addressed by hospital staff today, as they deliver fluids and medications necessary for Paige's recovery.

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I know this ride will slow down at some point.  Roller coaster rides don't last forever.  We may be going through a crazy time right now, but all those loops, twists, and turns will lead to a straighter, calmer path.  We'll pull into the station and unbuckle the seat belts that have been holding us in so tightly.  We'll happily plant our feet on solid ground and begin a new season in our family.  A season of healing.  A season of renewed hope.  A season of thankfulness like we've never known before.  How I long for that day!

Trust in the Lord with all your heart, and do not lean on your own understanding.  In all your ways acknowledge Him, and He will make straight your paths.   Proverbs 3: 5-6

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