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

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.

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.

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.

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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.

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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

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.

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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

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