Wednesday, December 31, 2014

2014 - A Look Back Before Moving Forward

Hey there, 2014.  I know you're on your way out and everything, but I'd like to take a few moments to look back at the year that changed our lives forever.  It won't take too long, I promise.  There are parts I can't think about for too long, times I'd just as soon forget--though I know I never will.  Trust me, 2014, I'm as ready for you to get outta here as you are.  I just wanted to show you that you didn't get the best of this family.  Someone bigger and tougher has had our backs all along.

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January.  Talk about starting the year off with a bang.  Paige's leukemia diagnosis rocked our family to the core.  Brought us to our knees like nothing we'd ever known.  Totally broken, I completely let go and turned the whole thing over to God.  He could control what I couldn't--and He did.  He gave me a peace that has sustained me from Day One.
Cast your cares on the Lord and He will sustain you...  Psalm 55:22

February.  The reality of cancer hit hard.  Multiple chemotherapy treatments and procedures caused Paige's body to become significantly weaker--to the point of her knees buckling and sending her to the floor one day.  Her hair thinned more and more each day, devastating to a teenage girl.  Yet in the midst of all this reality stuff, Paige's attitude remained unchanged.  This, she told me, was "just life right now."  God was always right there to give Paige (and the rest of us) strength in difficult times.  He still is.
I can do all things through Him who strengthens me.   Philippians 4:13

March.  We rejoiced in the news that Paige's bone marrow, blood, and spinal fluid showed zero signs of cancer cells!  The giant mass on her chest--the monstrosity that set everything in motion--was also GONE!  Ten weeks into a journey of continuous prayer and unwavering faith--and Paige was officially in remission.  God was healing our girl.
And whatever you ask in prayer, you will receive, if you have faith.   
Matthew 21:22 

April.  Three months of intense chemo finally took their toll on Paige's once long and beautiful hair.  She decided it was time to let go the last strands of what she now referred to as her "old man biker hair."  The strength and courage she exhibited in that moment left me teary-eyed and speechless, but not surprised.  By that point, she'd realized God was always with her--whether it was through chemo or getting the rest of her hair shaved off.  We, on the other hand, realized this girl can rock the bald look!
...Be strong and courageous...for the Lord your God is with you wherever you go.   Joshua 1:9

May.  We witnessed one of the scariest moments since the start of this journey.  A week after her first hospital stay for high-dose chemo, Paige experienced stroke-like symptoms--legs and feet that felt heavy, an arm unable to move, and speech so slurred it was difficult to make out anything she was saying.  A battery of tests, including an EKG, CT scan, and MRI, ruled out a stroke.  It turned out to be an extreme reaction from the previous week's chemo combination that called for an admission to the hospital for rescue medications and monitoring.  She rebounded quickly enough to go home just a couple of days later.  Those were some scary days, but God was in control the whole time.  He held Paige in His hands while holding the rest of us up.
So do not fear, for I am with you...I will strengthen and help you; I will uphold you with my righteous right hand.   Isaiah 41:10

June.  Due to some necessary adjustments in her treatment plan, it was a really good month for Paige.  Her body was tolerating the medications, she had sufficient time to rest and recover in between treatments, and she was able to be a kid.  For a girl who basically had to grow up overnight, this was a really big deal.  Hanging out with her friend.  Taking in a movie.  Fishing and swimming with the family.  It did wonders for her spirit, giving her a glimpse at great times to come.  She needed it.  We all did.
For I will restore health to you...   Jeremiah 30:17

July.  We discovered another downside in Paige's treatment regimen.  Steroid therapy did a number on her bones, weakening them to the point where a seemingly painless slip resulted in a fracture in her right fibula.  This girl was in pain day and night until we were able to get a medication schedule that would give her some relief.  A walking boot--which she later 'Paige-ified' with plenty of bling--gave her much-needed stability to get up and around again.  I remained faithful in prayer, continuing to ask God to restore Paige's health, and thanked Him every day for the healing we were seeing.  As the days went by, I learned more and more what it meant to pray without ceasing.
Pray without ceasing...   1 Thessalonians 5:17

August.  This month brought Paige's birthday and the start of school--both done a little differently this year.  A bone density scan bright and early on the morning of her birthday combined with intense chemo a few days before meant a subdued day at home.  In remission, cancer-free.  Pretty great birthday gift.  Her first day of school a week or so later also went without the usual hoopla, as she was still receiving homebound instruction.  Bloodwork and a transfusion took the place of first-day photos, though rest assured--when she does return to school, this mom will be taking all the pictures Paige will allow!  Thankful for the hope given to us through Jesus, I can wait patiently for photo ops to come.
I wait for the Lord, my soul waits, and in His word I hope.   Psalm 130:5

September.  Hospital admissions were the mainstay of this month.  Fevers and low ANC counts kept us at TCH more than we liked--yet I couldn't be more thankful that those were the only things keeping us there.  During one of our stays, Paige was in good enough shape to participate in a ribbon-tying ceremony commemorating Childhood Cancer Month.  She was also beyond excited to meet Dr. Jennifer Arnold--so excited she couldn't do much more than smile!  We finished out the month with the first of Paige's high-dose chemo 'make-up' administrations.  Like she had done so many times before, Paige faced it with strength and bravery that is just plain inspiring.
Be joyful in hope, patient in affliction, faithful in prayer.   Romans 12:12

October.  Our family was due for some fun.  Paige was in between hospital stays for chemo when The Sunshine Kids Foundation and former Houston Astro (and future Hall of Famer) Craig Biggio hosted their annual baseball party.  It was a day full of fun, complete with batting practice, a catered lunch, and even a swag bag--but the coolest part by far was seeing Paige's favorite baseball player ever visiting with (and joking around with) the families.  This special time--another glimpse at fun times to come--was just what she needed to carry her into the next round of treatments.
A joyful heart is good medicine...   Proverbs 17:22

November.  We crossed another bridge this month when Paige officially began the maintenance phase, which will last just under two years.  The medications during this time will work together to rid Paige's body of any tiny, hard-to-detect leukemia cells that may be lingering, waiting to cause trouble further down the road.  The journey is far from over, but we've hit a significant milestone.  It's time to press on toward that finish line!
But if we hope for what we do not see, we wait for it with patience.   
Romans 8:25

December.  God has met our needs in so many ways this year.  Physical needs have been met through the day-by-day restoration of Paige's health, most recently with the completion of her radiation treatments.  Emotional needs have been met through peace and calm assurance only He can provide.  Financial needs have been met time and time again.  In the meantime, God, who is always faithful, continues His work in our lives.  Our trust, our hope, our everything--is in Him.
And my God will supply every need of yours according to His riches in glory in Christ Jesus.   Philippians 4:19

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Well, 2014...there you have it.  It's been quite the year, but you didn't get the best of us.  We are still standing.  Standing on faith and hopeful for the future that God has planned for us.  Feel free to get on outta here now.  

Can't Put a Price on This Gift

Christmas and my birthday fall at the end of December.  Talk about saving the best for last!  We celebrate the birth of our Savior and exchange gifts with those we love.  Boyce and the kiddos always put real thought into selecting gifts for me, which just touches my heart.  My favorite gift this year, however, didn't come from a store.  It wasn't even placed under the tree--though that would have been a sight!  My most treasured gift of 2014 is having my daughter here with me.

I've been somewhat of a mess this month.  Maybe it's the fact that she's no longer getting the harsh levels of chemo that, while slamming her body, still kept the cancer away.  Maybe it's the fact that she will be heading back to school next month--which I keep telling myself is a good thing, though we will still have many precautions in place as she continues treatment.  Maybe, just maybe--it's the fact that this time last year Paige was getting sick, so sick that just a couple of weeks later we found ourselves facing a giant we never could have imagined.  Regardless of the cause, it was time for a solution.  I needed to stop worrying about things beyond my control and get my focus back to where it belonged--on God and His amazing grace.

Our family always attends a Christmas Eve candlelight service at church.  The last couple of years, because of Boyce's crazy retail schedule over the holidays, it's just been the kids and me.  This year, though, all four of us were there--which I know was not a coincidence.  We needed that time--to worship, to celebrate, and to give thanks together.  It was the best Christmas Eve yet!

Christmas Day was just as wonderful.  Thanks to some special people who wanted to bless the socks off of our family, Paige and Jeremy had presents under the tree, around the tree--basically all over the living room.  It was just awesome watching them open their gifts, excited about the things they'd received.  At one point Paige was sitting there, looking around at everything.  I asked her if she was okay (something I do way too much, I know), thinking maybe she wasn't feeling well.  "I'm okay, Mom," she said.  "This is all just a little overwhelming--that people would do all this for us."  Overwhelming, indeed.

It's overwhelming sometimes to think about how far Paige has come.  How she has handled everything her body and mind have been through.  How she has grown in strength and faith.   I couldn't be more amazed at this girl.  Having her home and seeing the healing in her are the best gifts I could have received this year--or any year, for that matter!

Every good and perfect gift is from above...   
James 1:17

Wednesday, December 24, 2014

God Meets Our Needs Again & Again

Cast your burden on the Lord, and He will sustain you...   Psalm 55:22

A couple of days before Paige was diagnosed--when she was really, really sick--I dropped everything at work to stay home and take care of her.  It'll only be a couple of days, we thought.  She'll be back to herself in no time.  Little did we know that over eleven months later I would still be home with her.  Of course, there was nowhere else to be--caring for this precious girl through phase upon phase of intense chemotherapy was the top priority.  Outside our little bubble, though, life went on.  Our income was immediately cut in half, but bills were not--they would soon take on a life of their own.  Instinct said it was time to crumble in worry and fear, but God said it was time to stand on faith and trust Him.  We placed our daughter in His mighty hands, yet over the course of this journey, God has shown us time and again that He is holding on to us as well.    

It's more than a little mind-boggling to pause and reflect on just how many times--and in how many ways--God has met our needs this year.  In fact, He continues to do so.  He meets our family's physical needs through the process of healing our girl--and in keeping the rest of us healthy.  He meets our emotional needs by providing peace and calm assurance through the many storms we have encountered along the way.  Storms that could have knocked us to our knees, yet here we stand.  He meets our financial needs by sustaining us through months when money was quite honestly the last thing on our minds.  In fact, our kiddos now have a nice stack of gifts under the tree--all thanks to some amazing people placed on our path at just the right time.  After the year they've experienced, it makes my heart incredibly joyful to know Paige and Jeremy will have a wonderful Christmas morning.

You gain a whole new perspective when your life is turned upside-down, but I've come to really treasure this new point of view.  I try my hardest to live out the verse God spoke to me over eleven months ago--to be joyful in hope, patient in affliction, and always faithful in prayer.  In the meantime, God, who is always faithful, continues His work in our lives.  Our trust, our hope, our everything--is in Him.

Tuesday, December 16, 2014

Radiation Rewind

December.  It's the most wonderful time of the year, right?  Had this been a 'normal' December, I would have been pulling out the cute holiday t-shirts for school, scheduling a quick family photo session for the perfect Christmas picture, and coming up with all kinds of activities and outings for my kiddos to keep us occupied over the break.  By now you can guess that this December has been anything but normal.

December 1 - 5:  First week of cranial radiation treatments.  Paige had gone through the simulation a few weeks earlier, so she knew what to expect.  However, the newest leg of this journey had us all a bit on edge.  Of course, Paige was amazing--as usual.  On the very first day, she checked herself in and didn't look back when the technicians came to get her.  I think she was on a mission to get it over and done--I was actually glad she didn't turn around that first day, as this momma had some very watery eyes.  Watery, teary--take your pick. 

Thankfully, radiation is a relatively quick procedure.  It actually took longer to get her into position than it did to administer it.  In fact, Paige estimated the total radiation time at just over 20 seconds.  These short appointments were very different from those long clinic and chemo days earlier in her treatment.  More than anything, this stuff wore Paige out.  She was more fatigued than I'd seen her in quite some time, and she experienced headaches (this was to her brain, after all) that we were able to get under control.  The two-day break of the weekend gave Paige a chance to really, truly rest and let her body prepare itself for the following week.

December 8 - 10:  The last few days of treatments were basically a repeat of the previous week.  Fatigue and headaches continued, but these side effects were still manageable.  We had a countdown going, and it was pretty incredible seeing Paige come out and ring the bell after her eighth--and final--radiation treatment!  What an awesome way to wrap up this leg of the journey!


December 16: Still feeling the effects.  It's now been almost a week since Paige has received radiation.  While the headaches have subsided, the fatigue continues.  Her doctors said this could last a little while, but we've learned to be patient through this process.  We take it one day at a time.  One victory at a time.

It does look like radiation is going to take Paige's hair.  Most kiddos get this treatment at the end of the last phase, when they're still pretty bald.  Delays and make-up doses of chemo gave her hair the chance to start the growing process.  In fact, my girl had a nice little covering of hair working for a while--and then it hit.  That weird feeling on her scalp she refers to as her hair 'jumping ship.'  Again.  To say she is upset about this turn of events is an understatement.  The first time around devastated Paige--her long, beautiful hair came out little by little, day after day, until it was all gone.  The second time she had the littlest bit of peach fuzz until a series of very intense chemo treatments took it away.  This time was different.  She was getting more comfortable, more confident.  While it's not something Paige wanted to experience a third time around, I've gotta say she rocks the look--and she knows it!  Besides, that hair will come back before too long.

Come to think of it, this really is the most wonderful time of the year.  My girl knocked out radiation treatments before Christmas, she's getting healthier and stronger every day, and she is here.  Can't ask for anything more than that.

More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.   Romans 5:3-4

Saturday, November 29, 2014

Giving Thanks EVERY Day

Giving thanks always and for everything...   Ephesians 5:20

Thanksgiving Day 2014.  Parades.  Family.  Too much good food.  Giving thanks for our many blessings.  Sounds pretty typical, right?  It's been our norm for as long as I can remember.  This year, however, was different.  For our family, thankfulness took on a whole new meaning.  Hit a whole new level.  I knew it was going to hit me at some point--I just didn't realize it would hit when I was praying before our meal.

Lord, we thank you for this day.  We thank you for this time to gather together as a family... Then I lost it.  I held on to Paige and eventually made it through what seemed like the longest prayer ever.  I am not usually one to find myself at a loss for words--in fact, I had plenty to say.  I was just completely overwhelmed.  Our gathering was at home, not a hospital room.  Paige was able to eat--anything she wanted--and didn't have to add anti-nausea meds to the mix.  There was eating.  There was laughing.  And my girl was right in the middle of it all.

I have always been thankful for the blessings God has given me, but this year has taught me what it means to be truly, wholly thankful.  Not just one day, but every single day.  Thankful for God's love, mercy, and amazing grace--that I have seen in abundance over the last ten months.  Thankful He gave me an incredible family growing in strength and faith all the time.  Thankful for the healing happening in my daughter--and the hope for her spectacular future.

The Lord is my strength and my shield; in Him my heart trusts...and with my song I give thanks to Him.   Psalm 28:7

Tuesday, November 25, 2014

Crossing a Bridge

I like to run.  There's a shirt I've seen online that says something to the effect of, "I run to burn off the crazy."  Considering the events of the last 11 months, those words ring very true for me.  Running gives me a chance to get moving, take in the beauty of God's creation, and just breathe.  It really does help burn off the crazy, I'm-gonna-lose-it feeling that can try to take over sometimes.

There's a wooden bridge on my usual path that for some reason fascinates me.  I've paused several times to take a quick picture before crossing it.  There's nothing special about the bridge.  The view around it is quite beautiful, but it's just a wooden bridge--or is it?

Bridges take us from one place to another--sometimes from the familiar to the unknown.  There is no way of knowing exactly what lies ahead.  Over the last several months, I've thought of my little bridge as representative of various milestones in Paige's treatment.  Successful recovery from procedures.  Smooth administrations of intense chemotherapy.  These milestones are exciting because they put us one step closer to the finish line, but they can also bring new anxieties over the unknown.  Just gives us more to pray about, I suppose--and a chance to see some pretty amazing glimpses of hope.

A couple of weeks ago we crossed another bridge on this journey when Paige officially began the maintenance phase.  Were we ready for this?  Absolutely.  Almost 10 months of medications that all but destroyed her body in the name of saving her life, it was time to take in some new sights along our path.

The maintenance phase will be the longest leg of this journey, lasting just under two years--yes, two more years.  It goes in three-month cycles, during each of which Paige will receive one lumbar puncture sending a small amount of chemo into the spinal fluid, three short chemo infusions through her port, monthly steroid therapy, and two oral chemo medications--one nightly and one weekly.

Yes, our travels are far from over.  This medication regimen is extremely important in working to rid Paige's body of any tiny, hard-to-detect leukemia cells that may be waiting to cause trouble further down the road.  A bright spot of this very scheduled regimen is that it won't cause Paige's counts to tank like the more intense medications did--meaning she should be able to begin a transition back to school sometime after the first of the year.

Before we get too far into maintenance, Paige must complete 8 treatments of cranial radiation.  Because leukemia cells like to hide in spinal fluid--which leads to the brain--this is considered a preventive measure.  Thankfully, she has never shown any evidence of disease in the spinal fluid, so she is receiving a smaller number of treatments.  The simulation was a few weeks ago, and actual treatment begins next week.  This will be one of the few treatments Paige has to receive without me right there by her side.  I've gotta say--this momma doesn't like that one bit.  I know it's in the name of safety, so it's yet another time I've got to remember she is never alone. God has been with her since this all began, and He will continue to be there every step of the way.

We have crossed the bridge into maintenance and press on toward that finish line.  Yes, it's a couple of years away--but it's there waiting for us nonetheless, and we couldn't be more thankful.

But if we hope for what we do not see, we wait for it with patience.   
Romans 8:25

Thursday, November 13, 2014

Learning How to Pray Differently

Prayer.  Spending time talking (and listening to God).  For as long as I can remember, it's been part of my life.  Of course, the way I pray has changed over the years.  This goes for the rest of my family as well.

Prayers of a child.  These standards taught me to talk to God--the listening part came later on.  Every dinnertime found me saying the usual--God is great, God is good.  Let us thank Him for our food.  Bedtime had its assigned prayer as well--Now I lay me down to sleep, I pray the Lord my soul to keep.  When Paige and Jeremy came along, they learned the routine as well.  These prayers were important and served their purpose.  God heard every one of them--after all, He hears the prayers of all His children, big and small.  The day just comes when you realize it's time for more.  Time to really talk to God.

Prayer grows up.  As I grew up, so did my prayers.  I ditched the 'scripted' routine and focused on what was most relevant to me at the time.  Health and safety.  Wants (that at the time I considered needs).  The future.  We talked to the kids several years back about revising their prayer rhetoric, and it followed a similar pattern.  Keep us healthy and safe.  Please let me do well on a test.  We all got really good at talking to God--but that listening part was still a challenge.  Sure, I'd do okay sometimes.  Other times that I-can-control-all-things part of me would take over.  Then one day, it happened--things got a little too real and a whole lot out of control, and there was nothing I could do to fix it.

Prayer gets real.  My prayer life saw its most significant change about ten months ago--around January 10th.  It was then I discovered a real, crying-out-to-God, on-my-knees kind of prayer.  As parents, we do whatever is in our power to keep our kids safe, healthy, and happy--yet some things are beyond our control.  Take cancer, for example.  Even ten months into this journey, it still seems like a bad dream--and I'll wake up one morning with everything the way it was.  It's nice to think about, but I know that won't happen.  Paige's diagnosis rocked our world in more ways than I can count, but it also gave us strength beyond measure.

One of those boosts--actually, jolts--of strength came in our prayer life.  January 10th had us on our knees--physically, emotionally, and spiritually.  We cried almost uncontrollably upon hearing Paige's diagnosis.  When the tears could no longer fall, we cried out for her healing.  And then we did what is so hard for many of us to do--we gave it all over to God.  Our worries, our fears, our absolute trust in His plan for Paige.  I remember telling Him that I knew I couldn't fix this, that I couldn't control what was happening with our daughter.  That we were giving the whole situation completely to Him, knowing He had a plan for Paige we will never fully comprehend.  And I did what I should have done all along.  I sat still and listened.  His response was an overwhelming, mercy-and-grace-raining-down-on-us kind of thing.  And it changed my life.

Prayer becomes specific.  Paige's illness taught me to pray differently.  In many ways, I think I've gotten better at it.  Not only am I specific in my prayer requests (with the cancer chaos, it's become a necessity), I am specific in giving thanks.  For Paige's healing.  For being able to be by her side every step of this journey.  For holding our family together when things could very easily have come unraveled.  The kids have learned as well--praying for our clinic and hospital friends by name (and situation if they know it).  For peace and comfort for friends who have recently lost loved ones--that "they will know God is there with them."  I love that my kids have hearts like this.

Prayer.  As long as I have breath, I will give glory and honor to God for the amazing life He has given me.  Through calm waters and stormy seas.  He is mighty.  He is faithful.  He is worthy.

You will seek me and find me, when you seek me with all your heart.   
Jeremiah 29:13

Wednesday, October 29, 2014

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.

Wednesday, October 15, 2014

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

Wednesday, October 8, 2014

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!

Saturday, October 4, 2014

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

Friday, October 3, 2014

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

Sunday, September 28, 2014

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

Wednesday, September 17, 2014

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

Wonderful Week at HOME

There's no place like home!  There's no place like home!  After a 7-day 'staycation' at the hospital waiting on counts to recover, Paige and I have enjoyed some much-needed time at home with Jeremy and Boyce.  Yes, it meant a delay in treatment.  Yes, we are more than ready to be done with this part.  But I've got to say--it was amazing having our family all under one roof again.

Eating dinner together at home.  All four of us.  

Taking in a couple of movies at the actual theater.  Off-peak times, of course--can't take any chances right now.  All four of us one time, just the girls for the other.

Kitchen time with the kiddos.  Baking and frosting cupcakes.  Paige loves to bake, and this was the first time in quite a while she's been up to it.  She and Jeremy did the majority of the work while Mom supervised.  Yum, yum, yum!  A few nights later, Dad helped Paige and Mom prepare dinner--it was Paige's special request of King Ranch Chicken.  Delicious!

Game time.  We are suckers for board games.  Always have been.  From Life to Connect Four to Scrabble--we love 'em all.  Having time to just hang out and play games was something we all needed.

These things all seem very simple, very ordinary.  And I suppose on some levels they are.  But as our family has come to find out over the last 8 months, any time we can spend together is extraordinary.  Priceless.  Cherished.  And the best part--there will be much more time together.  The best is yet to come!

Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.   1 Thessalonians 5:18

Monday, September 8, 2014

Another Hospital Stay in the Books

Paige is in remission.  She's been cancer-free since early February.  This is nothing short of a God thing.  The mass that seemingly appeared out of nowhere and the cancer cells that developed in her bone marrow--GONE.  Every day I thank Him for taking the disease out of her body--but that's not the end of it.  There is still more healing to be done.  Paige's body must be 'prepped and primed' to prevent those bad, bad cells from ever coming back.

What does this mean?  Months of intense chemotherapy, which we are getting closer to finishing.  Fatigue.  Muscle weakening.  Nausea.  Adverse reactions.  Delays.  The list of 'yuck' factors Paige has dealt with is quite extensive, yet she faces each obstacle with courage like I've never seen before. She is fierce.

The latest hurdle came about 9 days ago.  I'd finished bedtime prayers with the kiddos and was working on a blog post when Paige called me to her room.  She had the chills.  Was fine an hour earlier.  Not now--she was spiking a fever.  A short time later we were on the road to TCH, knowing what would lie ahead.  Fever plus low counts meant antibiotics and a hospital admission.

Early in our journey, Paige would get upset about the ER trips.  Fortunately (or unfortunately, I suppose), we've now done this a number of times and have quite the routine established.  It's a pretty calm process--discover a rising temp, phone the on-call docs, grab our pre-packed 'get outta here' bag, and hit the road.  We pray as we are pulling out of the driveway and talk the whole way there.  Not scared.  Not even all that anxious.  We know she's going to be well-cared for.

This particular hospital stay lasted 7 days--2 days less than the one a month ago, so that was nice.  Blood cultures all came back negative, and the fever subsided after just a day or two.  The thing that kept us there this time (as in previous admissions) was her next-to-nothing ANC count.  This magic number tells how well she can fight off infection and would keep us there until doctors felt it was safe for her to go home.

Paige felt pretty good during our stay this time around and was honored to meet one of her heroes, Dr. Jennifer Arnold!  She surprised Paige with a visit to our room, and my girl could hardly stop smiling--it was wonderful!  Paige and I also participated in a ribbon-tying ceremony commemorating Childhood Cancer Awareness Month.  It was really special, and I'm so glad we were able to attend.

After transfusions of platelets and red blood cells, a week's worth of antibiotics, and just playing the waiting game, Paige was released to go home.  We're grateful for a few days to rest and recover in the comfort of our own home.  Next up--hospitalization for chemo when her counts are back where they need to be.  I have no doubt Paige will face this just like she does everything else--with strength and bravery that is just plain inspiring.

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

Monday, September 1, 2014

Spreading the Word

September is Childhood Cancer Awareness Month.  You may have noticed gold ribbons appearing all over social media as part of the campaign.  I changed my profile pic to honor not only Paige and her fight against leukemia, but also to honor other kiddos past and present who have taken on battles of their own with strength and courage that is nothing less than inspiring.

I am also on a mission to become more informed.  The infographic below (courtesy of Alex's Lemonade Stand Foundation) breaks down some of the facts and figures related to childhood cancer.  They are downright mind-boggling.


Eight months ago, childhood cancer waged a battle on my family.  Against my daughter.  I watch her fight back with everything she has, treatment after treatment, delay upon delay.  Strong in faith and hope, she presses on--and we are right beside her every step of the way.  Our family is blessed in that Paige's type of childhood cancer can be effectively treated.  Years of research and various treatment studies corroborate this.  Paige will get past this 'blip' on the radar and go on to lead a healthy life, sharing her incredible testimony along the way.

Not every family receives such promising news.  There are many who lose their warriors to subtypes of cancer that are still puzzling to even the best of the best.  This is why it is so very important to get the word out.  There is still research to be done.  There are many lives to be saved.  Our kids deserve nothing less.

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

Sunday, August 31, 2014

No "What Ifs" Allowed

Paige is one of my heroes, and I know there are many who share this sentiment.  She has taken on this battle with such incredible bravery, it's mind-boggling at times.  Yes, my daughter is pretty tough--most of the time, anyway.  Occasionally, Paige takes off her superhero cape and shows her 'regular' side.  She cries.  She gets nervous about treatment.  She just plain gets scared.  This we can handle.  We talk.  We pray.  We move forward.

Once in a while, Regular Paige pushes Super Paige out of the way and starts talking about the 'what ifs.'  She has gotten more comfortable talking about all kinds of things with me.  As the mom of a 14-year-old girl, I love that!  However, I have found that I have to draw the line at 'what ifs'--What if we would have waited one more day to go to the doctor?  What if I weren't here right now?--things of that nature.

Don't get me wrong--this journey has been difficult.  I have lost count of the number of times I've felt like someone knocked the wind out of me.  My heart races for a few seconds as I catch my breath and push away thoughts that are not good for any of us.  I say a prayer and focus on the day at hand.  Not on yesterday.  Certainly not on events from 8 months ago.

That was when our family decided to leave our worry and fear at the feet of God.  To let His will be done in our lives.  To trust Him to get every one of us through this unimaginable experience.  We praise Him through the good days and the not-so-good days, and our family has grown in so many ways because of it.  Stronger in our faith.  Trusting in God's perfect plan.

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.   Philippians 4:7

Monday, August 25, 2014

A Different First Day of School

Today was my daughter's first day of high school.  Freshman year.  I've pictured this day in my mind several times over the last few years.  Weepy mom, aggravated daughter (because of the weepy mom).  Any mom with a teenage daughter understands that!  Obligatory pictures at home and at school.  I was ready.  What I wasn't ready for was January 10, 2014.  That day changed everything.  Our short-term plans.  Our priorities.  Our lives.

Over the last eight months, Paige has faced more challenges than we ever could have imagined.  Biopsy.  Leukemia diagnosis.  Bone marrow aspirations.  Spinal taps.  Weekly chemotherapy.  Blood and platelet transfusions.  ER visits.  Planned and unplanned hospital stays.  Each one of these obstacles has made her stronger.  Physically.  Mentally.  Spiritually.  Stronger.

The original 'road map' we received at the beginning of our journey held a bit of hope that Paige would be able to begin this school year with her friends.  If you've followed us for a while, you'll recall a few events that led to delays in treatment.  Fever leading to 8-day hospital stays---on more than one occasion.  A severe neurological reaction that called for a 'detour.'  Though Paige faced each obstacle with unwavering faith and courage, she knew the chances of returning to school in August were getting slimmer and slimmer.  And then...the day was upon us.

August 25, 2014.  My daughter's first day of high school.  Freshman year.  No pictures or fanfare.  Instead, bloodwork and a platelet transfusion were the order of the day--though there was a small celebration when she made it through reaction-free!  Paige begins her freshman year receiving homebound services as she completes the last couple months of IV chemo.  She should return to school sometime this year, continuing treatment mostly via oral meds over the next two years.

Stay tuned.  Paige will have one of those treasured first-day pics.  Hers will just come a little later in the year.  I can see it now.  Weepy mom, this is for sure--though it may very well become full-on waterworks--and a daughter ready to take on anything that comes her way.  

I wait for the Lord, my soul waits, and in His word I hope.   Psalm 130:5

Saturday, August 23, 2014

The Tough Get Even Tougher

My daughter is pretty incredible.  The bravery and courage she has displayed over the last 7 months just keeps on coming, and this week was no exception.  I'm telling you--it was a rough week.  Roughest in a while--yet just when I think I've seen her at her toughest, she goes and kicks it up a notch--or ten!

A trip to clinic early in the week got Paige a giant bag of platelets complete with an allergic reaction at the end.  A not-so-little hive popped up on her eyelid.  Thankfully, antihistamine meds did the trick.  After some observation time (and no other issues), we headed home for the day.

Our actual clinic day later in the week held even more 'adventure.'  Paige's counts were low, yet not low enough for another transfusion that day.  It is, however, on the agenda for Monday.  Her infection fighting cell count is very low, so she was grounded by her doctors until it starts to climb back up to acceptable levels.  Go figure--we were offered tickets to Friday's One Direction concert and were unable to accept.  Oh well...maybe next time!  This weekend's main goal is avoiding an ER trip.  With counts this low, it would warrant an automatic admission and a couple days' worth of antibiotics.  As much as we would have loved an evening out, we love staying out of the hospital even more!

Throwing another wrench into things, Paige's spinal tap that day did not go as smoothly as the last couple have.  Of course it happened to be the one time I decided to stay in the room.  She was more alert than usual, and the needle was less cooperative.  Not a good combination.  Thankfully, the 'loopy meds' she received helped her forget some of it--sort of wish I would have had some of those!  Paige is still experiencing soreness in her back, yet she has only asked for pain medication a couple of times.  She's trying to forego the meds tonight as well, tough girl that she is.

After the tap was complete, it was chemo time.  In the mix that day was a drug with a higher potential for reaction and thus a longer monitoring period.  This particular one usually sends Paige's anxiety level off the charts--even though she has never experienced an adverse reaction to it.  Maybe the traumatic tap had something to do with it, but Paige was calm throughout that chemo.  She even sent her dad and brother on a food-finding mission.  If she's eating, I know she's going to be just fine!

Our week ended yesterday in the office of an orthopedic specialist.  An exam and x-rays showed Paige's leg fracture is healed.  there was no sign of that fracture on the x-ray.  No need for physical therapy.  No reason to continue with the boot.  Our girl is back to wearing two shoes!  Of course, she has to take it slow and steady as she gets moving again--but, WOW!!!  Healing happened, and it happened much sooner than expected.  What a wonderful way to end such a rough week!  God gets all the glory!

***********************

I can give example after example, story upon story that would serve as testimony to Paige's strength, courage, and all-around 'toughness.'  However, she's not the only tough one out there.  Pediatric cancer patients are extremely resilient.  Long days at clinic have given us opportunities to connect with others on similar journeys.  At the heart of every one of those families is a kiddo who is tough--and keeps getting tougher every step of the way.

  • A little one battling a brain tumor--one that has now shrunk to half its original size in just a few months.  Paige loves this little guy's smile and looks forward to seeing him when our clinic days coincide.  His parents also have a strong faith that will not be shaken, and we look forward to sharing weekly updates on our brave kiddos.  There is always a reason to be thankful!
  • A girl several years younger than Paige.  Her cancer relapsed, and she is here from out-of-state for a trial therapy.  On just her second day in town, she was recording a song in the clinic studio.   Paige joined her in a few games of Old Maid while her mom and I got acquainted, sharing stories about our princess warriors.  This girl doesn't let anything slow her down--kind of sounds like another girl I know!

Full of hope for the future, the tough get even tougher.

For it is God who works in you...   Philippians 2:13

Monday, August 18, 2014

Small Victories (That Aren't So Small)

I can do all things through Him who strengthens me.   Philippians 4:13

"I can do all things..."  Powerful words used by the apostle Paul.  He experienced good times and bad--as we all do--and learned to be content no matter the circumstances.  As I read through this chapter, I couldn't help but notice connections to Paige's journey.

Verse 4 - Rejoice in the Lord always.  That's something we do on a regular basis around here.  Counts good--rejoice.  Chemo tolerance--praise time.  The latest hallelujahs came when we received the results of Paige's bone density scan.  Though steroid therapy has caused some weakening of her bones, there is no significant bone loss that would require adding to her medication regimen.  I'd say that's cause for rejoicing!

Verses 5 & 6 - ...The Lord is at hand.  Do not be anxious about anything...  Over the last 7 months I have witnessed Paige's faith get stronger and stronger.  When she's upset about a rough day, we pray together and ask God to give her the peace and calm assurance she needs to move forward.  She knows God is always here.  He never leaves her side.  I fully believe He restored the confidence she needed to try walking around this week without the boot.  Slowly but surely, healing in her leg is happening.  One step at a time.

We have been in the process of reducing Paige's scheduled pain medication.  Down to one per day, Paige decided to forego last night's dose, promising to tell me if she started to experience any kind of pain.  Almost 24 hours later, things are still looking (and feeling) great.  God is here, and He is good.

Verse 8 -  ...if there is anything worthy of praise, think about these things.  Yesterday I administered Paige's last at-home IV chemo.  Yes, she still has a few months of IV chemo at clinic and in the hospital--but we take things one day at a time around here.  The fact that we have completed the final dosing of the 'home version' is very, very worthy of praise!

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Our family has learned firsthand the power of God's amazing grace.  We turn to Him in all circumstances.  We can do all things through Him!

Sunday, August 10, 2014

A VERY Special Birthday

Over the last few years, Paige has followed a little routine for her birthday.  Since I'm usually back at work, she enlists my husband to help bake and decorate her birthday cake.  One year they created a giant peace sign.  Last year's creation was a minion (from the Despicable Me movies).  The cakes always look--and taste--great, and Paige enjoys the extra time with her dad.

Today is August 11th--my girl's 14th birthday.  A bone density scan replaces cake baking this year.  The intense chemo Paige has received over the last four days means movies and board games at home while she recovers.  No birthday shopping or dinner out--and that is just fine with me.

She smiles for the future,
for she knows who holds her future.
You see, just seven months ago we received news that no parent ever wants to hear.  Your daughter has cancer.  With those few words, our world was changed forever.  Goals.  Priorities.  Everything.  Getting Paige healthy and well again--that was the new goal.  Praying and doing everything we could to make sure she would see many more birthdays--that was the new priority for our family.

This journey has had its ups and downs--that's for sure.  It is a long road to travel, but we are getting closer to finishing the tough stuff.  Completing IV chemo and getting into maintenance is a few months away, but I can already see a party in the planning!  Of course, Paige will probably insist on baking the cake--I don't doubt it for a second!

This year's birthday, while low-key due to Paige's treatments, is nonetheless a very special birthday.  My girl is here with me.  She is in remission and cancer-free.  I think those are pretty amazing gifts, wouldn't you say?

Thanks be to God for His inexpressible gift!   2 Corinthians 9:15

Month Seven - A Few Hurdles

August 10th.  Today marks seven months since Paige's leukemia diagnosis.  During this time, we have witnessed incredible healing, unimaginable strength, and extraordinary courage.  We remain thankful for everything God is doing in our lives.

Last month I wrote about the many reasons for celebrating.  This month I write asking for a few extra prayers, as Paige has encountered some hurdles on this leg of our journey.

Midway through the first month of this phase of treatment, Paige began experiencing severe pain in her right leg.  Two trips to clinic and an x-ray later, it was determined she has a hairline fracture in her right fibula.  Medication helps with pain management, and we are working to decrease the number of doses per day.  Paige is doing well with her walking boot.  It takes pressure off the leg and provides stability for increased mobility.  There is no evidence the fracture will not heal--it will just take more time.  There's that "patient in affliction" thing again. :)

A sudden fever led to a 9-day hospital stay.  Thankfully, there were no signs or symptoms of infection.  We just had to let it run its course.  The hospital admission did allow time for an MRI of Paige's leg, which showed weakening of the bones.  Steroid therapy, while excellent for treating leukemia, can really do a number on the body.  Paige will undergo a bone density scan tomorrow, after which her doctors will determine if additional medications or infusions will be added to her treatment regimen.

Finally cleared to begin the second month of this phase, Paige resumed intense chemo a few days ago.  In addition to meds administered at clinic, I administered 3 days' worth at home.  Paige must also take an oral chemo medication for the next 14 days.  Needless to say, the girl has had her fill of meds--literally.  With so much running through her system, her appetite is shot.  I'm hopeful that the next few days without IV chemo will have her feeling just a little better before we repeat the cycle next week.

This has been an emotional week for my girl.  Paige knows she is getting better.  She knows the meds are necessary--even with all they do to wreak havoc on her body.  She knows we are inching closer to that finish line.  She's just tired, but she will press on, knowing there's a wonderful victory awaiting her.

I press on toward the goal for the prize of the upward call of God in Christ Jesus.   Philippians 3:14

...we are more than conquerors through Him who loved us.   Romans 8:37

Sunday, August 3, 2014

Patient in Affliction

Romans 12:12.  There's a reason this verse spoke to me at the beginning of this journey.  Over the last 7 months, we have experienced the highs and lows that are part of the healing process. The good days remind us to be joyful in hope.  The not-so-good days remind us to be patient in affliction.  Every day reminds us to be faithful in prayer.

I must admit our family has really been tested on the "patient in affliction" part the last couple of weeks.  Medications that are excellent in leukemia treatment can really wreak havoc on the body.  Weakened bones led to a fractured leg requiring scheduled medications to manage the pain, a walking boot for increased mobility around the house, and a wheelchair for longer times out and about.  A sudden fever with no other symptoms led to a 9-day hospital stay.  A temperature that stayed relatively normal during the day yet spiked each night resulted in multiple blood cultures and other markers being run.  Each test came back clear, yet although Paige was considered clinically healthy, the persistent fever was a cause for concern--and reason enough to remain hospitalized until it broke.

Our family of 4 was separated for more than a week--another test of patience.  Paige and Mom adjusting to the close quarters of a hospital room.  Jeremy and Boyce together at home and at work.  We managed a few short visits when time allowed, but it just wasn't enough.  I guess absence really does make the heart grow fonder--because these siblings really missed each other.  Of course, you wouldn't know it seeing their interactions our first night back at home. :)

Yes...we made it home today!  Paige was able to go 2 nights in a row with normal temperature readings---BIG praises to God!   We came home to finish the course of antibiotics and allow more comfortable resting and recovery before chemo treatment resumes on Thursday.  I thought we might break out in a happy dance--but Paige wasn't stable enough with that boot, so we opted for prayers of thanksgiving once we made it to the car.  Many prayers of thanksgiving as God continues to heal this girl.

Times get tough, and this journey is not an easy one--not by a long shot, but our family is doing our best to live out Romans 12:12 every day of this journey.  Joyful.  Patient.  Faithful.

But if we hope for what we do not see, we wait for it with patience.   Romans 8:25

Saturday, August 2, 2014

Baby Steps

I can do all things through Him who strengthens me.   Philippians 4:13

I almost can't remember the last time I saw Paige walk with no pain.  I know it's only been a few weeks--but it's been a very long few weeks.  One of the goals during our extended hospital stay has been to get her pain under control, which would then allow us to work on increasing her mobility.  I think I can safely say we've seen some success.

An adjustment to her pain medication regimen has brought Paige a significant amount of relief.  She is now able to change positions while sitting or lying down without experiencing extreme pain.  In fact, she is taking only scheduled meds and hasn't had any 'breakthrough' pain that would necessitate extra dosing.  I've found myself just watching her as she's resting or watching television--the peaceful look on her face speaks volumes.

The introduction of a boot this week has allowed Paige to get around on her own.  She was a little apprehensive at first, but Physical Therapy staff worked with her until she was comfortable navigating the halls on her own.  They even 'graduated' her, saying she was doing so well that their job was done.  Paige is now somewhat of a pro with the boot and is getting used to strapping it on every time she needs to get up and around.  It's done wonders with taking the pressure off the injury--and giving her back some of the independence she's desperately missed.

One step at a time.  One day at a time.  Thankful all the time.

Monday, July 28, 2014

Tough Girl, Tough Week

Pray without ceasing...   1 Thessalonians 5:17

Prayer.  When I was young, it was the standard, "Now I lay me down to sleep..." and "God is great..." As I matured, so did my prayers--yet it sometimes seemed like I was doing more asking than thanksgiving.  January changed all of that.  I ask God every day to restore Paige's health, giving her strength, peace, and comfort.  I also thank Him every day for every bit of healing we have seen on this journey.  This week has been no different--though it has shown me more and more what it means to pray without ceasing.

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Hospital Stay--Day Three.  The tough stuff continues.  Her temperature seemed to be on its way back to normal, but Paige spiked a fever last night--the highest since all this began on Friday.  It was determined today that some of the medications she's been taking for pain could have masked a fever earlier in the weekend.  Cause of the fever?  An infection, though thankfully not a blood-related one.  Nevertheless, any infection is an issue for those with compromised immune systems.  The current course of antibiotics should be sufficient for recovery from this.  We will remain in the hospital until her temperature 'behaves' and her doctor feels it's safe to send her home.

The leg fracture continues to cause Paige an extreme amount of pain and today included some adjustments to her pain medication regimen.  We need her to have more mobility, but that can't happen when she's in excruciating pain putting any weight on the leg.  Paige has never been one to complain of pain, so the sheer agony I see on her face and hear in her cries is nothing less than gut-wrenching.

In addition to changing the medication plan, we have some physical therapy exercises to try.  Paige is also being fitted with a boot to see if it will offer any relief.  She's actually looking forward to this--so she can try to "bedazzle" the boot!  That's my girl!  At least she's looking for the positive things in this.

It looks like there is some degeneration in Paige's hip bones and leg bones (somewhat like osteoporosis)--effects of the steroids and presumably the cause of the fracture.  Weaker bones break easier.  Calcium and Vitamin D have been added to her daily regimen, and a bone density scan will determine additional treatments and/or medications that may be needed.

Tough stuff?  Indeed.  Tougher girl? You bet!  God is bigger and tougher than all of this, and He has delivered Paige through so much already.  I have no doubt He will keep the healing going as our friends and family continue to pray without ceasing.

Saturday, July 26, 2014

A Wild Friday

What a difference a day makes.  Wait--make that 12 hours.  We arrived at clinic Friday morning ready for labs that would determine if Paige would make counts and be cleared to begin the second half of this phase.  Still in pain from the fracture in her fibula, Paige was hoping she would get an extra week of rest and recovery.  She got her wish--sort of.

Counts did not make, so a spinal tap and 3 other chemo drugs were off the table that day.  Paige had 'orders' from her doctors to go home and rest her leg, have a boring week (in the land of intense chemo treatments, boring is great), and come back next Friday to try again.  We arrived back at home, and Paige made a beeline for her spot on the couch.  It's been the most comfortable place for her since the whole fracture incident.

She'd been feeling a little tired and seemed pale in color but was otherwise fine.  When her counts are low, I often go on heightened alert.  I have a tendency to hover a bit too much, checking her cheeks and forehead to make sure they aren't warmer than usual.  Paige jokingly asked if it would make me feel better to check her temperature.  I hadn't planned on it, but she was offering--what could it hurt?  She'd been fine.  Had been.

When the thermometer displayed a temperature over the acceptable threshold for oncology patients, my heart sank and I had to catch my breath.  She'd been fine just 12 hours earlier.  Knowing I had to keep calm for her, I went into auto-pilot mode.  Actually, I've been in that mode for about a week--her leg pain has prevented Paige from getting any kind of real rest at night.  A short time of monitoring only saw the temperature rise, so after contacting the on-call physician, Paige and I headed to the hospital, praying out loud as we asked God for healing over her body.  

This wasn't our first rodeo, so we knew what to expect on arrival.  Blood drawn for labs and cultures.  Fluids--lots of fluids--pushed.  Three antibiotics begun.  Within a couple hours, Paige's temperature was normalizing--and it has thankfully kept that trend since we were placed in a room early this morning. What surprised us, though, was lab work less than 10 hours later showing a significant drop in her hemoglobin level--enough to necessitate a transfusion.  Though the process causes Paige some anxiety, she was glad when the fatigue and lightheadedness she'd experienced earlier slowly faded away and color began to reappear in her face.  Answered prayers, indeed.

Tonight we are in a holding pattern, hoping to get some much-needed rest.  We find out the results of the blood cultures sometime tomorrow and should get a better idea of when we can head home.  In addition to some rough chemo, this week should include an MRI to get a better look at Paige's leg fracture.  In the meantime, we remain faithful in prayer and continue to ask God for Paige's health to be fully restored.  For peace and comfort during times she cries out in pain and frustration.  For healing of the fracture in her leg.  For safe deliverance through the remainder of chemotherapy treatments and procedures.  For a victorious testimony that gives Him all the glory.      

For I will restore health to you, and your wounds I will heal...   Jeremiah 30:17