Romans 12:12 Revisited

Late October 2014.  Almost ten months in on this journey, and we are crossing another bridge.  A very significant bridge.  If her counts cooperate, Paige will begin the maintenance phase of treatment tomorrow morning--complete with a spinal tap and short chemotherapy infusion.  This final phase will be her 'hangout' for just under two years.  Seems like a great time to revisit the verse that has come to epitomize how we do life in this family.  

Be joyful in hope.  Joyful, ecstatic, overjoyed.  Paige is healing.  Did you catch that?  She is healing!  To say we are thankful for the work God is doing in her life is the understatement of the millennium.  We thank Him every day for the healing He has done.  For the healing that is to come.  For just a glimpse at this miracle in the making, take a look at the before and after.  A giant 16-centimeter mass blocked air and blood flow--it is GONE, my friends.  Out of here.  Leukemia cells have been banished from her bone marrow.  Treatments and procedures, side effects and hospital stays.  Over the last nine months, Paige's body has tolerated things that would leave most adults in a puddle on the floor, yet she doesn't dwell on that.  Nope, not this girl.  She's too busy looking ahead to the future.  Her future.  Paige plans on becoming a pediatric oncology nurse.  She has such a heart for kiddos going through similar experiences--I have no doubt she will be amazing.  How's that for hope?  Makes this mom pretty stinkin' joyful!

Patient in affliction.  Healing takes time.  Patience.  Faith in God's timing.  Trust in His perfect plan.  I'm here to tell you--it's not an easy task, not by a long shot.  Seeing my daughter struggle to breathe, her body blasted and weakened from various treatments, and just knowing she was in the fight of her life has been nothing less than heart-wrenching at times.  Just when it feels like this journey is taking too long, that it needs to be done now--I have to take a breath and remember just who is in control.  Remember just how blessed we really are.  It's times like this when that peace that really does pass all understanding takes over.

Faithful in prayer.  Every day.  Every night.  All the time in between.  We thank God for putting Paige on the road to healing.  We thank Him for making her stronger.  For making our family stronger.  We pray for healing for hospital and clinic friends whose paths have crossed with ours--and peace and comfort for their families.  Prayer works, my friends.  God makes miracles happen every single day.  Our miracle's name is Paige.  Take a look at her amazingly beautiful smile and try to tell me otherwise.

Hope.  Patience.  Faith.  It's how we do life.  How we will continue to do life.  God is good--all the time.

Month Nine

This week we hit the 9-month mark on the journey to getting our girl well.  There are times it feels like we've been on this path for eons, while other times it feels like we just heard the news yesterday.  Talk about an emotional roller coaster.  There are days I have to stop and catch my breath and thank God she is here with us.  My daughter.  My baby girl.  The child I carried for a little over nine months.  The hero I have before me today.

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2000.  Nine months then.  When this precious child was forming in my ever-growing belly, it was a time of excitement.  Ultrasounds giving us a glimpse of a beautiful face.  Hours poring through books telling me what to expect.  I was expecting, after all.  Baby showers with all the trimmings.  Anticipation of the big day.  Our lives forever changed.

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2014.  Nine months now.  Devastating diagnosis followed a joyous holiday season.  X-rays, CT scans, and MRIs gradually revealing the shrinking and subsequent vanishing of a large mass that was suffocating my daughter.  Clinic visits, procedures, and chemo administrations.  No way to predict or fully prepare for what was to come.  Benefits and fundraisers demonstrating incredible love and support.  Taking one day at a time while keeping our sights on the finish line.  Learning what it means to fully trust in God's plan, timing, and amazing grace.  Our lives forever changed.

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Nine months into this journey, and we are finally nearing the end of the intense portion of Paige's treatment.  One more high-dose chemo administration.  Cranial radiation to follow.  Up next is the maintenance phase, which will cover a span of about two years.  Compared to the giant roller coaster we have ridden thus far, I'm hoping the next ride is more akin to a kiddie park version.  Paige will still receive some chemo through her port, though in smaller doses.  Oral chemo (pills), steroid therapy, and occasional spinal taps will continue to be part of the treatment regimen.  It sounds like so much, and it really is--but for a girl who has battled some Goliath-sized giants over the last nine months, it's all in a day's work.  Paige is currently in remission and has been since February.  Cancer-free (there's that catching my breath thing again).  Keeping her that way requires another couple years of maintenance phase therapy.  In the meantime, I will never stop thanking God for the healing He has done in Paige.  I will never stop thanking Him--praising Him--for the healing yet to come.  Look at this smile--this girl deserves nothing less.

Before I formed you in the womb I knew you...   Jeremiah 1:5

And we know that for those who love God, all things work together for good, for those who are called according to His purpose.   Romans 8:28

Emotions Run High

Two down, one to go.  Paige made it through the second hospital stay with 'make-up' chemo pretty well.  Her body cleared the excess chemo on time, and she's been more tired than anything else.  As I type this, we are at home (yay!!) getting ready to head back to clinic tomorrow for a check-up and possible blood transfusion.  Her hemoglobin count was a bit low when we were discharged on Monday, so it won't be too surprising if she needs a boost.

Four hospital stays in two months.  At this point, our routine is pretty set.  Pack anything and everything--from clothes and toiletries to snacks and water (yes, even 'good' toilet paper).  We walk in prepared.  I go to work decorating her door--placing signs & scriptures according to her directives.  Paige and I work together to jazz up the windows.  We love those crystallizing glass markers!  Days are filled with homework, artsy stuff, games, and visits from family and friends.  Because hospital cuisine isn't exactly what Paige craves (ever), I am also the runner to and from local food establishments.  I never know what she's going to want--heck, she doesn't even know until it hits her. Chemo does some crazy things to the taste buds, but I'll do what I have to when my girl feels like eating.

Evenings at the hospital find us watching the sunsets.  I love the windows in the rooms--there are actually some really beautiful views of the sky from our home on the 9th floor.  Paige and I usually bundle up in blankets (at least I do--she keeps it like a meat locker in there) and just chill out.  Lately our chill time has turned into chat time.  I must admit--I'm kinda liking that part.

Last week's talks were a little different.  Struggling with emotions.  Wrestling with thoughts.  These are just a couple of the take-aways.  Throughout this journey, Paige has rarely let go of her emotions.  She keeps them in check most of the time--in spite of the fact we encourage her to 'spill.'  She's definitely not like her mom in this respect.  I have been known to let everyone know just what I'm thinking and feeling at any given time.  What can I say--the girl has her own way of dealing with things.  It's all good.

Hearing about one of the little ones from our floor who was moved down to the ICU hit my girl pretty hard, though.  The words began to flow.  I was down there when I could barely breathe.  Is he having trouble breathing?  Is he going to be okay?  What got so bad he had to go down there?    Does this kind of thing happen with my kind of leukemia?  As I shared what I knew about the situation, I could see the tears welling up in her eyes.  Paige has such a heart for the 'cute little bald kids,' as she calls them.  She says she can say that because she is one.  We are used to seeing kiddos on our floor--especially the little ones--smiling and playing.  We are used to seeing them take rides in wagons with their IV poles.  We are even used to seeing them resting in their rooms--sick and tired of cancer and all that comes with it--during our strolls around the floor.  This marked the first time we were there when one of those kiddos was moved to Intensive Care.  It was tough on her as a fellow patient and tough on me as the mom of a child fighting cancer.  Our hearts were breaking for that family.

From that point, we have prayed and prayed and prayed some more for that precious little boy and his family.  He's still fighting, and we are still praying.  Paige makes it a point to include all of the other kiddos affected by childhood cancers--whether we know them by name or not.  She prays for healing for all of them so they don't have to "keep going through what kids should never have to go through."

Funny thing, though.  After we've prayed--including giving thanks for the healing God has done in her and that to come--Paige has this sense of peace that takes away the worry about what might be.  What could happen.  That's when her faith takes the reins once again.  Faith, peace, and the calm assurance that though times get tough, God is bigger and tougher and will not leave her side.  Ever.  Now that's a reason to be emotional!

Mom & Dad on a Mission

I'll be one of the first to admit that though I've always been aware of cancer and its devastating effects, I was never truly, completely, painstakingly aware until it came after my family.  My daughter.  My baby girl.  A doctor looks you right in the eyes and says, "Your child has cancer."  That, my friends, will take your level of awareness right off the charts.

Awareness of the battle, the struggle, the fight.  Watching Paige go from a completely healthy teenager--I'm talking no issues whatsoever--to a young lady suddenly in the fight of her life--for her life--has been nothing short of heartbreaking at times.  Fatigue.  Weakness.  Nausea.  Pain.  Those are just a few of the physical effects cancer has had on my daughter.  It's taken a toll on her emotions as well.

Awareness that your lives will never be the same again.  Homebound instruction and weekly trips to clinic replace attending high school and hanging out with friends.  Low counts and a compromised immune system mean no weekend movies or other large-crowd activities.  Planned--and unplanned--stays in the hospital steal time from home, time from our family.

Awareness that through it all, we are still very blessed.  We really are.  Paige's cancer is treatable.  We have been fortunate to spend more time at home than in the hospital.  It's a long process, but there is hope.  She has cleared hurdles big and small, and we will press on until we cross that finish line together.  Other families aren't that lucky.  Some kids spend weeks, even months, in the hospital.  They decorate IV poles instead of school lockers.  Nurses and Child Life Specialists are some of their best friends.  I'm telling you--it can weigh really heavy on the heart.

Awareness that something has to change.  Too many precious children are lost to childhood cancers.  They deserve the chance to be kids.  Kids that can go play without being tethered to IV poles.  Kids that can go to school with their friends without fear of catching a basic cold that could land them in the hospital.  Kids that get to grow up, period.  About 25,000 people were out supporting this year's Houston Komen Race for the Cure.  That is amazing.  I have several friends who have battled this disease and truly believe that increased awareness has resulted in many lives being saved.  Most of the money raised stays right here in our city to fund research that will help even more families affected by breast cancer.  I'm here to say--even shout it from the rooftops if need be--that kids need that same level of support.  

Awareness that it has to start somewhere.  Why not here?  Almost 500 children are diagnosed with cancer every single day.  Over 175,000 kids are diagnosed worldwide every year, yet less than 5% of the federal government's yearly funding for cancer research is dedicated to childhood cancers.  It's time to set a goal of making September 2015 the new "Gold Standard" of increasing awareness and funding in the hopes of one day annihilating this horrific disease.  Our children deserve nothing less.

Behold, children are a heritage from the Lord...   Psalm 127:3

A Blast at the Ballpark

Fun outings for the Lejeune Four have been few and far between this year.  Hospital stays and the effects of chemo treatments typically result in more movie and game nights--or just hanging out--at home, and I'm totally fine with that.  Really.  Time under one roof--no matter the activity--is something I will never take for granted again.

Imagine our excitement over an invitation to a baseball party.  Timed perfectly between hospital chemo treatments.  Oh, and this wasn't your typical baseball party.  It was a take-over-the-field, hang-out-with-a-hero kind of party.

For over 20 years, former Houston Astro and future Hall of Famer Craig Biggio has worked with The Sunshine Kids Foundation to host this annual outing for kids fighting cancer.  Their families get to tag along on this special day.  We played on the field, and the kids took batting practice with Craig himself.  A catered lunch in the Diamond Club made us feel extra special, not to mention extra full!  Sunshine Kids and their siblings each received a "swag bag" full of snacks and Astros memorabilia--you can't go wrong with that! But the coolest thing?  Craig--Paige's favorite baseball player ever--visited with kids and their families during lunch, joked with them during photo ops, and was just all-around genuine in his interactions.  Great day of memory-making for us all!  

It's said a picture is worth a thousand words--looking at the smiles on these faces, I think that just may be an understatement.

A joyful heart is good medicine...   Proverbs 17:22

Hope & Healing

Have you ever tried to see how long you could hold your breath?  I remember childhood challenges to see who could do it the longest--sometimes it was underwater in the swimming pool, other times it was just several of us standing there watching each other.  Silly?  Yes.  A battle for bragging rights?  Absolutely.  Those 20- to 30-second victories were simply awe-inspiring.

Fast forward 30-something years.  I think I've set a new personal record for holding my breath.  Forget timing in seconds--let's try about 9 days, starting when Paige received the first of three high-dose chemo administrations--the 'make-up' work in her leukemia treatment.  24 hours of chemotherapy.  Five days in the hospital.  Constant monitoring and caution for several days at home.  Yes, this morning I was actually able to exhale.

The first attempt at this four months ago resulted in a trip to the ER when Paige experienced stroke-like symptoms.  Thankfully, she rebounded quickly--even joking later that evening that her motto was "go big or go home."  I distinctly recall reminding her that we couldn't go home because she kept going so big. :)

Needless to say, we were all a bit--okay, a lot--anxious about trying this again.  A few adjustments were made to the treatment, and the leukemia team had Paige's safety and well-being in mind the entire time.  We trust their judgement--they've shown true compassion and care for Paige and our family from the start.  God put them on our path for just this purpose.  I called on every prayer warrior I know, and we got to work.  1 Thessalonians 5:17 tells us to "pray without ceasing"--and that's what we did.  Prayer works, my friends.

How do I know?  Hospital stay went as planned.  Chemo levels cooperated at each check.  Anti-nausea meds worked well.  Fatigue was manageable.  Best of all?  Fear and anxiety about what might happen was nowhere in sight.  Was it somewhere in the back of our minds?  Of course.  It's tough to forget one of the scariest days in your life.  Was it taking over?  No way.  We continue to trust God's plan for healing our girl.  There were--and still are--too many reasons to celebrate and give thanks.  

After a few days at home, the major fatigue began to subside.  Paige's counts were good at our follow-up clinic visit--she was smiling and joking around with her doctors, so I knew she was feeling better.  We even made it out for a few simple errands later in the week, enjoying lunch out and giving Paige a chance to show off Mom's handiwork on her nails.

Today, however, was the absolute best day since we've been back home.  Coincidence that it also happens to be a Sunday?  Nope.  All four of us attended church this morning--between low counts and hospital stays, that hasn't happened very often in the last few months.  We were able to visit and pray with our pastor after the service.  It was a great start to the day, and it kept getting better.

Paige and Jeremy worked together to make pizzas for their lunch, laughing as they piled mountains of cheese on their creations.  Deciding she wanted to continue the Italian theme for dinner, Paige made homemade alfredo sauce to accompany the pasta, broccoli, and grilled chicken she'd requested.  She even took care of plating the food--I wish I'd taken a quick picture, but the food disappeared too quickly!  Dessert consisted of cupcakes she baked with her dad and iced with her brother.  Can you tell her appetite seemed to be okay today?

Yes, I've finally been able to exhale.  I'm not holding my breath anymore in anticipation of what might happen.  I'm trusting God to take care of my girl.  I'm thanking Him for her healing and praying for her safety.  And I'm cherishing every single second of days like today.

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

Facing the Giants Again

Mid-September.  We were hoping by now Paige would be finished with all of the IV chemo and well on her way to maintenance.  That was our plan.  As we have learned many times along this journey, our timing doesn't always match up with God's timing.  As for Paige's chemo, we have some catching up to do--starting tomorrow.

Tomorrow is the first of 3 planned hospitalizations with high-dose chemotherapy.  When I say high-dose, I mean high-dose.  Two "big ol' bags" (as Paige says) of chemo administered over 24 hours.  About five days in the hospital.  Lots of monitoring at home afterwards.  This is "make-up work" in her treatment--pardon the school reference, but I am a teacher after all!  After a very scary reaction the first time through this--way back in May--Paige's doctors have decided this particular drug is too important in leukemia treatment not to try again.  After much discussion with the leukemia team, which includes one of TCH's original researchers, they have put together a plan they feel will be safe and effective in continuing Paige's treatment.  These doctors have shown incredible compassion in caring for Paige--and the rest of our family--and I am certain God is giving them the wisdom and discernment they need to take care of my daughter.

Are we anxious?  A bit, yes.  But as we have done all along, we are trusting God and praying.  Praying that the chemo will get in, do what it's supposed to do, and get out ASAP.  Praying for peace and calm assurance.  Praying that God will continue to equip Paige--and our whole family--with the physical, spiritual, and mental strength we need to get through this next part of our journey.  As my uncle reminded me this evening, we know who holds tomorrow--and we know who holds Paige's hand.

Yes, we figured we would be closer to the maintenance phase by now.  However, our sense of timing really doesn't matter in the grand scheme of things.  God has a perfect plan, and He continues to amaze us with this incredible testimony He is creating in Paige.  She is a warrior, fierce in her determination to win this battle.  I have no doubt she will be victorious.  An overcomer.  Isn't she already?!?

A sweet friend and co-worker sent me the following excerpt from a devotional she came across--I thought it was a perfect close to this post:

"Not to the strong is the battle,
Not to the swift is the race;
Yet to the true and the faithful
Victory is promised through grace."
                                 --Crosby