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