Saturday, December 10, 2016

December's Double Whammy

December, aka "The Most Wonderful Time of the Year."  Not for our family.  Not this year.  This month has taken on the feeling of a one-two punch.  A double whammy.  She should be here.  Paige should be here.  Healthy.  Happy.  Never having to take on cancer once, let alone two and three times.  Don't get me wrong--I know she is healthy and happy now.  I know she is going to have the most amazing Christmas in Heaven.  I know I will see her again one day.   Still...she should be here.     

Whammy #1,  "The Obvious One"
She should be here.  Paige should be here helping me bake holiday goodies and watching our favorite Christmas movies.  Doing things we've come to know as traditions for the Lejeune Four.  She should be making sure her accident-prone mom doesn't drop the candle at Christmas Eve candlelight services.  Dragging me out of bed on Christmas morning.  Eating pigs-in-a-blanket for breakfast.  Opening gifts and then anxiously waiting for us to open gifts she picked out just for us.  Going to Grandma's house for lunch and then laughing as Dad, Grandpa, and Uncle Craig doze off watching television.  She should be here.

Whammy #2, "The (Even More) Heartbreaking One" 
Paige was admitted to the Bone Marrow Unit on December 10th last year.  One year ago today.  It was the beginning of 9 days of "conditioning"--chemo, radiation, and more chemo--that would prepare her body for transplant.  Transplant, where new 'baby marrow' cells would take up residence in Paige's bones.  New cells that would work to build a brand new immune system.  New cells that were supposed to save her life.

For three months prior to that admission, Paige's body endured extremely hard cycles of chemotherapy.  It beat her up like I'd never seen--but in true Paige form, she pushed through every struggle, every setback, confident she would come out okay on the other side of it all.  December 18th was the day.  Paige's new birthday, as it's called in the transplant world.  She was so excited at the prospect of having 2 birthdays each year and had even thought about doing a silly cake smash for the 1st BMT birthday.  That girl--always planning ahead.  Always ready to move forward.

Being hospitalized during the holidays is not the ideal situation, but we were truly blessed by some wonderful individuals and organizations who wanted to give our family the best Christmas possible.  As you can imagine, there were several occasions I had to ask Paige for a wish list.  She was always reluctant to ask for much and told us more than one time, "I'm just happy to be here."  The girl could have listed just about anything and everything, but she chose not to.  She was simply thankful for hope.  Thankful for another chance at a healthy life.  Doesn't that say it all?  She should be here.


Our sweet girl suffers no more.  Forever healed, she is likely looking down at me thinking I need a swift kick in the pants for being sad.  But I am sad.  Some days I navigate the waters of grief pretty well, while other days find me struggling to get my head above water.  I miss her terribly.  My heart aches over what this world lost in that girl.  Over what I lost in that girl.  

How thankful I am for God's promise to be with us always.  No matter what, He is here.  He gives us the strength to keep putting one foot in front of the other.  One step at a time, one day at a time.  We will make it.  He will make sure of it.  God is good like that.

The Lord is near to the brokenhearted and saves the crushed in spirit.   
Psalm 34:18     

Sunday, December 4, 2016

Hope for Healing Our Broken Hearts

Tomorrow marks six weeks since Paige went to be with Jesus.  Six weeks since I held her hand in mine.  Since I looked into those beautiful eyes.  Six weeks since my heart shattered into a bazillion pieces.

While the holiday hustle and bustle is in full swing, it feels like our family is living in a separate world.  A separate world that moves at a snail's pace.  Even when we try to keep busy, time seems to drag.  Working through the grief of losing my girl takes on a whole new level of hurt this time of year.  Like many kiddos, Paige loved Christmastime.  Decorating the tree.  Baking yummy goodies.  Checking out light displays.  Watching our favorite Christmas movies.  All of these things were special because of the time we spent together.

Paige will spend her first Christmas in Heaven fully healed and whole.  I know we will be reunited one day, but this day finds my heart hurting.  Broken.  Truly shattered.  Life goes on all around, while I'm slowly navigating each day feeling like Humpty Dumpty, wondering how I'm ever going to feel put back together again.

My brain tells me to keep moving forward, and I am--one day (sometimes one hour) at a time.  I have to.  For Boyce and Jeremy.  For Paige.  For myself.  It's my heart I have to wrestle on a daily basis, and it's basically become a tug-of-war contest.  Here's just a glimpse:

I fall apart.  Getting ready to leave town--which in past years was not a big deal--for the first time as 3 instead of 4 proved to be quite taxing on the emotions.  Boyce and Jeremy got their things together, and I was just fine.  However, when I started laying out my own things, it hit me hard.  I'm usually the last one to pack, but we were missing a piece of the puzzle.  A beautiful, much-missed piece.  
I'm (temporarily) back together.  After a good cry, I finished packing.  We even managed to fit everything into one big suitcase, which was pretty impressive.  Turns out I needed that trip more than I realized.  We flew to Ohio to be part of an incredible event that honored our sweet girl.  Her face was everywhere--banners, shirts, a live-streamed broadcast.  We strengthened our bond with the incredible family that flew us up there.  We explored a beautiful metropark with winding roads, amazing fall foliage, and altogether peaceful surroundings.  It was definitely a weekend of healing.

I fall apart.  We're smack dab in the middle of the holiday season, and it's time to do a little Christmas decorating around the house--even if we aren't totally feeling it.  Boyce and I try to do 'normal' things with Jeremy as much as we possibly can, so it was important to us to get through it.  Going through bins of Christmas decor, I came across one containing decorations from our room on the Bone Marrow Unit last year.  Decorations we kept because Paige wanted to use them again one day.  Decorations that took my breath away and began the onslaught of tears.
I'm (temporarily) back together.  Just two days later, we returned to TCH to help spread Christmas cheer to the families calling the Bone Marrow Unit home this year.  The Chandler's Tree Farm organization blessed us last year, and it truly did our hearts good to give back this year.  What I thought might prove to be too difficult turned out to be more like a family reunion.  We visited with several friends--from patients to doctors to nurses.  It was yet another step in the healing process.

I fall apart.  When Paige relapsed again in July, we happened to be inpatient when the TCH Marketing Department visited the Hematology/Oncology floor.  They were looking to create some new materials for the Cancer Center and asked for permission to photograph our sweet girl.  A few days ago I received a phone call asking if we were still good with them using Paige's pictures, to which I answered, "Absolutely!"  Today I opened an envelope they sent that contained a CD and several of the printed photos.  They were pictures of Paige I had never seen before.  They were simply beautiful.  And I wept.  And wept.  
I'm (temporarily) back together.  Not yet.  But I will be.  Paige will make sure of it.

Our family is hurting.  I don't know that the hurt will ever fully go away, but I do believe it will sting a little less as time goes by.  I'm so thankful for the goofy, amazing young man we are blessed to call our son--who definitely keeps Boyce and me from totally sinking some days.  It's important we make sure he knows it's okay to keep going.  He's only 13, and we want him to go on to have a happy life.  Jeremy is already a great kid, but this whole experience will only serve to make him stronger in character and in faith.  I can only hope it will do the same for us.

Friday, November 18, 2016

My Guardian Angel

I miss my girl.  I miss her voice.  Her laugh.  Her smile.  I miss running my hands through that beautiful curly hair.  I miss watching our favorite shows together.  I miss nagging her about water intake.  I miss praying with her.  I miss everything about her.  Absolutely everything.

My sweet girl is no longer in pain.  I know it.  She is at peace.  I believe it.  She has eternal life with Jesus.  God promised it.  I trust His word even though I struggle to see the purpose in this particular plan.  He will reveal it in His time.

For now, we deal with the "firsts."  The first night home.  The first trip out of town.  The first holiday season.  I struggle like crazy with those stinking "On This Day" reminders on social media.  They're simply proof Paige was right; I sure did take a ton of pictures of that girl.  Each time one pops up, it tugs--actually, it yanks with great force--at my heart.  I take a moment to catch my breath and then take in every ounce of that beautiful smile.

Grief--and working through it--puts you on a very long, very rough road.  Losing a child doesn't just hurt.  It is devastating.  Elizabeth Stone likened having a child to forever having "your heart go walking around outside your body."  There is such truth in that statement.  I carried that precious baby for nine months--actually a bit longer--and knew everything about her routine during that time.  Elbows in my ribs--all day, every day.  Hiccups at 7 pm on the dot--every single night.  She even "craved" Sonic slushes several days a week; of course, I obliged.  I had to take care of my girl.  Fast forward to cancer diagnosis.  After diagnosis.  After diagnosis.  Medications, appointments--you name it, I was part of it.  Wiping her tears, holding her hand, cheering her on, and just plain being in awe of that girl.  Paige and I joked about being joined at the hip--and for almost three years, we truly were.  We drove each other crazier than we ever thought we could, yet at the same time grew closer than we ever dreamed possible.  Each day I'm trying to remind myself that she's still here with me, just in a different capacity.  That heart that walked around outside my body is now watching over our family.

Kinda great having such a cool guardian angel.

Behold, I send an angel before you to guard you on the way...   Exodus 23:20

Friday, November 4, 2016

A New Chapter Begins...

Our family began a new chapter this week.  Yet to be titled, it's a work in progress as we try to navigate this new road, this uncharted territory that finds just three of us in a place where there once were four.  Paige will always be with us, of course--on our minds and in our hearts.  In pictures of that beautiful face with the unforgettable smile.  In audio recordings of a beautiful voice at her silliest.  In videos showing crazy dance moves.  It's the whole "not being able to reach out and hug her" thing that's so stinking hard.

A little less than two weeks ago, Paige received her healing.  Her peace.  Her miracle.  As badly as I wanted that healing here--as hard as we all prayed for just that--it simply wasn't part of God's purpose for her life.  We will never know (on this side of Heaven) just how many lives our sweet girl touched in her 16 years.  What I do know is that her light will continue to shine.  Boyce, Jeremy, and I will make sure of that.  We have some pretty big shoes to fill, but Team Paige will carry on with a purpose.

I'm not done writing about our family's journey of faith as we enter this new season of our lives.  I am, however, altering the name of the blog--changing it from Pray for Paige to Team Paige.  Seems like a good place to start.  The blog address will stay the same for now, and older posts will still be accessible.  Gotta keep sharing our girl's story.  She deserves nothing less.

In the meantime, the boys and I will follow Paige's lead in living out Romans 12:12 - Be joyful in hope, patient in affliction, faithful in prayer.  I do hope you'll join us.

See You in a Little Bit, Sweet Girl

October 24, 2016.  Heaven gained its newest angel as our sweet Paige went to be with Jesus.  She finally received the healing and peace she'd been wanting and needing for so very long.  I'm so very blessed to have spent 16 years with that amazing young lady.  Brave.  Strong.  Determined.  Selfless in prayer for others.  Joy in the face of adversity.  Steadfast in faith.  I want to be like her when I grow up.

I miss my sidekick something crazy.  After all, we were joined at the hip for almost 3 years.  Next to my husband, the girl was my best friend.  I talked with her quite often about how something good--or lots of "something goods"--would come from her struggles.  We will continue to share her story and make sure her light continues to shine.  She deserves nothing less.  

I'll see you in a little bit, my love.

Monday, September 5, 2016

The Struggle is Much Too Real

...suffering produces endurance, endurance produces character, and character produces hope...   Romans 5: 3-5

Our family is struggling.  Struggling with feelings of helplessness as Paige is attacked yet again by the cancer monster.  Struggling to find peace in the storm that is raging.  Struggling, at times, just to remember to breathe.

As parents, my husband and I struggle to harness our thoughts as we watch our daughter fight sickness and pain.  To find the right words when there simply are none.  To put aside (as much as possible) worries about finances and work.  To focus on the here and now--and having our family of four together as much as possible, even if it's limited to the confines of a hospital room.

Our son struggles to find some kind of routine between school and hospital visits.  To get used to being at Grandma's house more than his own--though he is very well taken care of there.  He struggles with questions about Paige getting better and with answers we can't provide.

And then there's Paige.  Her struggle is the biggest of all.  Original diagnosis, relapse, and bone marrow transplant--all with bumps in the road.  A second relapse--this time with what feels like a mountain to overcome.  This girl has been through so very much, yet she continues to fight with everything she has.  Her faith overwhelms me sometimes, but it's no surprise to Our Heavenly Father.  He is here in the midst of the struggle, in the midst of the storm.

Yes, my soul, find rest in God; my hope comes from Him. Truly He is my rock and my salvation; He is my fortress, I will not be shaken.   Psalm 62: 5-6

Sunday, July 24, 2016

A Narrow Road

It's back.  For the third time in less than three years, we heard the word no parent should ever have to hear.  No child should ever have to hear.  No one should ever have to hear.  Cancer.

We have traveled this road since January 2014.  It has been long.  It has been difficult, yet by the grace of God we pressed on.  Through initial diagnosis and its challenges.  Through relapse and its uncertainties.  Through a bone marrow transplant and its aftermath.  We hit bump after bump after bump, yet we continued to push forward.  Paige was getting stronger every day.  There were plans to return to school.  Our family had started to experience the tiniest sliver of normalcy--when we encountered the biggest, most devastating road block thus far.

Last Thursday started out simple enough.  The kiddos slept in while I worked on a few things around the house.  We took in an afternoon movie.  It was great being able to hang out and do 'normal' things.  An early evening fever found us in the ER.  Sudden tightness in her chest meant an x-ray and subsequent CT scan.  The discovery of an all-but collapsed lung sent our girl to the operating room for placement of a chest tube, where they drained two liters of fluid.  Two liters.  A second collection chamber was attached to continue collecting the insane amount of fluid that had built up around Paige's lung, and we spent the rest of that night in the ICU.  Watching the clock.  Waiting on test results.  Hoping and praying our daughter had pneumonia or some kind of raging infection--just about anything other than what we were told a few hours later.

The leukemia is back.  After three aggressive rounds of chemo.  After radiation and still more chemo at transplant.  After donor cells created a brand new immune system to fight this stuff off.  One rogue cell (or more, I'm sure) hid out and initiated yet another attack on my daughter.  Out of nowhere, yet again.

Not only are we gearing up for a third battle with this monster called cancer, we are more limited as far as treatment options.  I've found myself describing this as a road that gets narrower with each diagnosis.
  • The first time around, we traveled a large highway.  If the medications in one 'lane' weren't well-received, we could always change lanes and try something else. 
  • Paige's first relapse detoured us to more of a two-lane road.  There were still some choices available, but the medications needed to be as aggressive as the leukemia.  
  • Relapse after a bone marrow transplant has placed us on an even narrower road.  There are not many medications our girl hasn't seen at this point.  However, her medical team is working diligently to put combinations together that we hope will attack the cancer cells without doing more damage to her already beaten-up body.
Over the last week, we have had conversations with doctors--and with our daughter--that have literally had us on the floor.  We have been angry.  We have been devastated.  But we are not giving up.  Her team is not giving up.  The odds may not look great, but God can still do a mighty work here.  He is here, and He isn't going anywhere.

Tonight I am praying for God's peace and calm assurance to wash over our entire family.  We need it more than ever.  I am praying that His mighty hands will heal my daughter.  She needs it desperately. And so we continue our journey down this narrow road, holding on to hope and asking God for a miracle.

Saturday, June 11, 2016

It's Hard Being Still

Be still, and know that I am God...   Psalm 46:10

I have a hard time being still. Anyone who has been around me for more than ten minutes can attest to that. Over the last couple of months, the need to keep moving has seemingly kicked into overdrive. Maybe it's anxiety. Maybe it's nervous energy. Maybe it's the fact that as I type this Paige and I are in the ER for the seventh time in about nine weeks. Yes--another nighttime fever spike, another nighttime trip to the hospital.

I know God is at work here. I believe in His mighty healing power and trust He is simply adding yet another chapter to Paige's already amazing testimony. I see this girl getting stronger every day, fighting for just a little normalcy in her life. At the same time we continue to find ourselves in a crazy spin cycle dealing with the aftermath of the beating her body has taken over the last couple of years. Seriously, it's taken on the form of wash, rinse, repeat. And repeat. And repeat.

Paige gets the slightest chill, and I rush over with the thermometer. Her temp hangs in a certain spot, so I check more often and start getting our travel bags out. She hits the 'magic number,' and I'm on the phone with the on-call docs. Within minutes we head to Houston. Once we do make it back home, I stay on high alert--for much longer than I should, to the point of driving my girl--and the rest of our family--crazy. If Paige is feeling okay, I'm up doing laundry, cleaning--anything I can do to keep from sitting down for more than a few minutes.  

Why can't I just be still? It's not like I think all that buzzing around is doing her any good. I do know that my mind gets a bit crowded with the negative stuff lately--like how tired I am of seeing my girl go through this again and again. How much she has missed out on. How stinking stressed out and exhausted we all are knowing there is no such thing as a routine of any kind anymore.

I know God is our Rescuer. Our Healer. Our Strength.  I know He will deliver Paige--and the rest of our family--out of this whole situation in much better shape than we were heading in. He is here and has been all along. He isn't going anywhere, so tonight--in this ER room--I'm going to try and be still. I'm going to ask for His peace and calm assurance to wash over me like it has so many times before. I'm going to ask for His mighty hands to continue to heal my daughter. I'm going to be still and know that He is God.

Saturday, May 7, 2016

A Little Reflecting

Today marks eight months since Paige's leukemia relapsed.  A little over eight months ago we were in the beginning stages of planning her Make-a-Wish trip.  We had started a new school year--Paige, Jeremy, and Mom--full of excitement and hope.  When the rug was pulled out from under us on Labor Day, every single feeling from her original diagnosis in January 2014 came rushing back.  Disbelief.  Helplessness.  Brokenness.  Paralyzing fear.  Every. Single. One.

We have come so far in these last eight months.  A battle to hit remission once more.  Bone marrow transplant.  One bump in the road after another...and another...and another.  As frustrating as this whole process is, I will not stop giving thanks and praise to God for the work He is doing in our lives.  He gives us strength when it feels we have none left, peace to calm us when we're at the end of our ropes, and renewed hope in His plan for our family.  Every. Single. Day.


This post is coming to you from the 14th floor at Hotel TCH.  Yes, we are back--our third admission in three weeks.  Paige was admitted with a fever last night, so we are playing the all-too-familiar waiting game.  Waiting on lab work.  Waiting to see what her temperature will do.  Waiting.

Tomorrow is Mother's Day.  In the good old days, we would go to church, enjoy a nice lunch, and visit Grandma later that afternoon.  Our plan this year was to hang out at home, as Paige is not yet able to be around large crowds.  Grandma would have received her gift when she came to the house today.  I guess I should know by now we don't really "do" plans these days.  Life has turned into a "fly by the seat of your pants" kind of thing--and it's really hard for my Type A self to handle at times.

Back to Mother's Day--I'm sort of all over the place today, but that's life as a Cancer Mom turned Bone Marrow Transplant Mom turned Mom Just Trying To Keep It Together.

I thank God for the honor of being a mom.  I'm a bit biased, but I happen to think my kiddos are pretty amazing.  In each of them I see courage, perseverance, and strength.  In each of them I see a light that shines bright with hope for the future.   They are my heroes.   They make me want to do better, to be better.

I thank God for blessing me with an incredible mom.  Not only is she still standing after the storms she has faced, she does everything in her power to keep me standing these days.  She is a fantastic mom and an out-of-this-world Gramoo.  She is my hero.  I can only hope to achieve that kind of awesomeness one day.


God is at work here.  I trust Him.  I trust His plan.  I trust He will bring our family out of this closer and stronger than we ever dreamed we could be.  Healing--physical and emotional--is coming.  I just know it.

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

Sunday, April 24, 2016

It's Okay to Cry

It's okay to cry.  Over the last 7+ months, I've had to remind Paige of that.  I've had to remind myself of that, though it must be said that lately I don't really need reminding.  I've shared before that Paige's relapse broke me--and there are days it hits harder than others.  Crying doesn't mean we are weak.  It doesn't mean we have given up.  It certainly doesn't mean we have lost faith.  It simply means we need to let go of some of the stuff that's been building up inside our weary souls.

Crying over the past.  I so wish I could look at old photos--before all of this--and just smile and move on.  That would be too easy, and nothing about our life is easy anymore.  Instead I linger a little too long, just long enough to feel the tears welling up in my eyes.  How I miss those days, never dreaming for a moment that one day things would be completely different.  That our whole world would turn upside down.  And then I cry.  Over what used to be.  Over what might have been.

Crying over the present.  It seems Paige comes across a different challenge every day.  Shoulder issues.  Knee pain.  The mess with her ankles.  Old virus still hanging on.  New virus her body is trying to fight on its own.  That's just the physical stuff, mind you.  Throw in the mental stress involved with rebuilding stamina to tackle schoolwork.  Paige is currently in beast mode trying to complete her sophomore year on time.  She doesn't want this to be yet another thing cancer tried to mess up for her.

Next we have the emotional battles and scars for a 15-year-old girl who has spent over 2 years fighting.  First time around, check.  Second time around, check-check.  Bone marrow transplant and recovery, check-check-check.  It has taken its toll on her.  And me.  And our entire family.
And then I cry.  Over what my daughter is going through.  Over how it's changed our lives.

Crying about the future.  As parents, we start dreaming about our kiddos' futures from the time they take those first precious breaths.  We start planning for childhood and the crazy teen years.  We look forward to dropping our young adults off for college.  To celebrating their first "real" jobs, wedding days, and even our future grandbabies.  Those dreams change with a cancer diagnosis.  The goal becomes to get rid of the cancer.  To do whatever it takes to get your kiddo healthy again.  To live as much of a 'normal' life as you can, knowing that it will never be the kind of normal you once longed for.  And then I cry.  Over the uncertainty about what will be.  Over the hope about what can be.


Please know that our days are not consumed with uncontrollable sobbing.  This is a bumpy road we travel.  Sometimes there are tears of sadness.  Other times there are tears of pure joy.  We have our moments--then we move forward in hope and strength that comes from none other than our Almighty God.  And we know it will be okay.

...Weeping may tarry for the night, but joy comes with the morning.   Psalm 30:5

Sunday, March 27, 2016

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.

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.

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.  

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.


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

Wednesday, March 2, 2016

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.


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.


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

Monday, February 15, 2016

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

Saturday, February 6, 2016

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.


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