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!


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.