Wednesday, February 26, 2014

Brotherly Love

"Mom, why did this have to happen to Paige?"  Jeremy asked as he was getting ready for bed last night.  Understandably, he asks this question quite a bit these days.  Below is part of a conversation he had with my husband on the way to school just a couple of weeks ago:

Jeremy: Sometimes I wonder why Paige got this.
Boyce: She's strong, God is going to use her for something big, and she'll fight.
Jeremy: I could've fought it instead.

Each time, we remind him she's not in it alone--that we're fighting this battle with her and that God already knows the date she will be well once and for all.  Still, he is just 10 years old--and trying to cope with the fact that his sister can no longer do some of the things she could just two months ago.  Playing outside.  Basic goofing around.  Chemotherapy, procedures, and the illness itself have zapped Paige's energy and physical strength.  Rather than be discouraged about what his sister can't do, Jeremy finds other ways to spend time with her.  Movies.  Rainbow Loom crafts.  Board games.  He still works in the outside, horsing around stuff--but with his friends instead of his sister.

Paige and Jeremy have always had that 'knack' for getting on each other's nerves and driving each other crazy from time to time--your typical sibling relationship. :)  In the midst of all that, there also resides a genuine love for each other that shines through when it is needed the most.  Lately, Jeremy is doing a great job of 'living it out.'  Bringing Paige a drink or snack.  Praying for her healing.  Saying "I love you" for no reason other than it's what he's feeling at the time.

This morning's commute to school found us talking yet again about how Paige would keep fighting to get better and better.  It gave me the chance to ask him a question this time:  How do we know Paige is going to beat leukemia?  His answer: Because God loves us and He can do anything.  And He can heal anyone.  Oh--and He's A-MA-ZING!  

At the age of 10, my son is having to watch his sister become physically weaker, lose her hair, and fight the battle of her life.  At the age of 10, this same young man would do anything in his power to help her feel better.  Little Brother of the Year?  No question about it--he wins, hands down!

Little children, let us not love in word or talk but in deed and in truth.  
1 John 3:18

Sunday, February 23, 2014

Old Hymn Hits Home

Needless to say, the last six weeks have been a whirlwind of hospital visits, medications, procedures, and transfusions--whew!  Sometimes it seems as though I barely have time to take a breath.  An email from a friend just a few days ago gave me that chance.

Her wonderfully encouraging message began by letting me know she prays for our family on a daily basis.  Her kind words served to lift me up after a very long day at the hospital.  That would have been enough to 'fill me up' for the day, but then...she shared the second verse and chorus of an old hymn:

"How sweet to hold a newborn baby,
And feel the pride and joy (s)he gives,
But greater still, the calm assurance,
This child can face uncertain days because He lives!

Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living just because He lives!"

And that did it.  Most days it seems I'm going..and going...and going--kind of like the Energizer bunny.  Simply reading the lyrics made me a little teary-eyed.  I really don't cry a whole lot right now--whether it's a lack of time or just the mindset of moving forward toward that goal of getting Paige healthy or something else altogether, I really can't say.  But these words did it--they just about put me in a puddle on the floor. :)

"Because He Lives" is one of my all-time favorite songs.  I remember my mom singing it as she played the piano in church.  I remember it being one of the first songs I learned to play on the piano myself.  When I became a mom, I sang it to Paige when I rocked her to sleep.  Now that I read and hear those familiar words during this season of my life, all I can say is "WOW!"  My child--and our family--can face uncertain days because He lives!

I am so thankful my friend felt led to message me that day.  She gave me a much needed chance to stop and breathe. :)

Let us draw near with a true heart in full assurance of faith...  Hebrews 10:22

And this is the confidence that we have toward Him, that if we ask anything according to His will He hears us.  1 John 5:14


**Click here for a YouTube clip of these powerful words!

Saturday, February 22, 2014

Somebody to Lean On

"Lean on Me" is a classic song that has been covered across music genres.  It shares a message that no matter who we are, where we are, or how we "do life," there will be a time we realize we can't do it all on our own.  DC Talk's upbeat version has found renewed airplay on our local Christian radio station, and every time I hear it, I am reminded of the many people God has given us to lean on during this season in our lives.

I have always been pretty good at multi-tasking--BD (Before Diagnosis), it was nothing for me to juggle a multitude of family, work, and grad school responsibilities.  A fierce sense of independence motivated me (unnecessarily, at times) to do as much as I could without accepting help from others.  This isn't always the best way to do things--it was just what I did.  Though she would never have admitted it before, Paige is very much like me in this manner--an independent, do-it-herself kind of girl.

January 10, 2014, changed everything.  It definitely changed the way we 'did life.'  Paige has had to get used to relying on us more.  Whether it's help getting around or taking care of the little things that aren't so little anymore, she's made the adjustment pretty well.  It has taken me a little longer, but I have come to the realization that it's okay for me to accept help too.  

We have been blessed in so many ways, I can't possibly list them all--but I figured I'd share a sample:
  • Prayer - This is such an important part of Paige's journey.  She has so many prayer partners and prayer warriors out there lifting her up on a daily basis--it's mind-blowing!  God is faithful and will deliver her!!
  • Listening - Providing an ear for us to share the incredible things God has done so far is much needed and much appreciated.
  • Fundraising - From bracelet and t-shirt sales to a 'labor of love' benefit and fun run, friends have shown an overwhelming amount of support and helped relieve some of the stresses associated with the many medical expenses as well as the reduction in family income. 
  • Gifts - Several friends have provided iTunes gift cards so Paige can load up on movies, music, and apps to get her through some very long days at clinic (and during some planned hospitalizations in the not-too-distant future).  Care packages given by classmates, teachers, and friends have provided snacks for long days and warm blankets for cold hospital rooms. :)  Mom & Dad haven't been left out--'love offerings,' grocery store and gas gift cards, a meal calendar, and our own care packages of household supplies help relieve some of our weekly expenses.  
  • Helping in General - My mom comes over so I can get out once in a while and also takes care of Jeremy when we are with Paige at TCH.  Friends invite Jeremy for sleepovers so he can 'have a life' when Paige is 'grounded' because of low blood counts.  This list gets bigger every day. :)
As someone who is used to doing it all, I have had difficulty getting to a point where I feel comfortable asking for help.  The realization that we are only 6 weeks in on a long journey is changing that.  God is taking care of Paige's healing, and He has provided us with a great support system.  I am very aware of how blessed we truly are.  So, my friends, I'm giving you fair warning...It won't be long till I'm gonna need somebody to lean on--again and again and again.

Bear one another's burdens, and so fulfill the law of Christ.  Galatians 6:2

Thursday, February 20, 2014

The Waiting Game

Tomorrow marks Week 6 of our journey of faith.  Our journey of spiritual growth.  Paige's journey of healing.

Now in the consolidation phase of treatment, today's clinic visit was slated to be a short one.  Short is a very subjective term these days--I currently define it as less than 9 hours (last week's clinic visit).

A short visit was not to be had today.  In fact, we set a new PR (personal record) of 10 hours.  It seemed as though one thing after the other happened in a way that would challenge our nerves, patience, and basic sanity.

Paige required another red blood cell transfusion this week, as her hemoglobin count was lower today than last Thursday.  Near the end of the first of two units, she began showing signs of an allergic reaction--hives on her face, stomach, and back, as well as a bit of facial swelling.  We were very thankful she didn't experience trouble breathing, which is much more serious than a skin reaction.  A strong dose of Benadryl did the trick to get her back on track.  The spinal tap, chemotherapy, and second unit of blood were administered once Paige was stable enough to tolerate everything.  Ten hours after arrival, we headed home.

There was quite a bit of waiting involved...waiting on labs to be returned, blood to be prepared, and medications to take effect--to name a few.  Paige continues to be a such a rock--calm in the storm of today's uncertainties.  She didn't complain when told we had to head up to the Medical Center two days next week rather than one.  Like one of Paige's doctors told her today, treatments have a "Hurry Up and Wait" component.  Our beautiful girl will be healed--we can certainly put in the time when needed!

By definition, a journey can be a long and difficult process.  Maybe that's what makes it so rewarding at the end!

Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!  Psalm 27:14

Sunday, February 16, 2014

Little Things Become Big Victories

Our family has experienced a world of change over the last five weeks, to say the least.  The search to treat Paige's pneumonia symptoms resulted in a leukemia diagnosis.  How does that happen?  How does a girl who has been healthy her whole life suddenly develop a life-threatening illness?  It doesn't make sense.  It's not fair.  It wasn't in our plans--but it was in God's plan.  

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

This verse helps remind me that the rough patches we are going through now will come together for a victory down the road--we've just got to keep walking in faith.  It doesn't mean it will be easy.  Should seeing your child lose her hair be easy?  Should watching her struggle to stand up be easy?  Of course not.  What it does do is completely change your perspective on the "little things" that suddenly don't seem so little anymore.

A fall last week left Paige with a very sore, very stiff left knee.  Weak from some of the medications, she said it felt like her legs just buckled on her--sending her straight to the tiled floor in the kitchen.  Thankfully, there was no fracture; it appeared she just bruised the bone.  As the pain subsided and her body began to recover, we celebrated as she was able to:
  • Get to a standing position by herself
  • Lift her legs to get in and out of the bathtub to shower
  • Move around the house more
  • Walk through a store without pushing a basket for assistance
These "little things" became big victories for a girl who, independent from the get-go, has had to rely on us for almost everything the last few weeks.  Getting her port de-accessed today gave her the freedom to be 'wireless' until our clinic visit later this week.  It's the first time in five weeks she hasn't had tubes coming out of her body--and she's ready for that small break!

These "little things" will result in a 'gigantenormous' victory when this is all said and done.  Paige will be stronger--physically and spiritually.  God will do His work in her throughout this journey, giving her the opportunity to affect so many lives with her story and His story! V-I-C-T-O-R-Y!! 

Friday, February 14, 2014

A New Mission Realized

We've made it to the end of a very long week.  Three days in a row at TCH yielded the following:

* Conference with doctors provided a detailed look at the next several months of intense chemotherapy treatments - necessary to knock out cancer cells and keep them from returning/regenerating, but difficult to see the toll they take on Paige.  These include longer infusions at the clinic as well as smaller doses at home via port and some in pill form.

Surgery to place her port and remove the PICC line went smoothly.  Today I learned how to administer meds through the port.  This will be my task three days a week for the next two weeks--until we hit the next leg of the 'road map.'

One blood transfusion.  Paige's hemoglobin count was low enough to require a boost of red blood cells.  I can't say I was surprised--her energy level has been low, and she has looked very pale the last couple of days.  We're very thankful she has not shown a negative reaction to the blood products.  In fact, a bit of color returned to her face, and she felt like getting up and around more today!  It's the seemingly little things that give me joy these days, but these 'little things' are great victories to parents of seriously ill children.

The long week took its toll on us all.  Boyce and I pushed through exhaustion as we helped Paige through doctor visits, chemo treatments, and 'no food allowed before surgery' times.  She had her first real cry after this week's long infusion session.  Her once-thick, beautiful hair is thinning rather quickly at this point--and continues to do so with this latest push of meds.  It was devastating seeing Paige completely heartbroken over this whole situation.  Seeing her fall apart gave me the go-ahead to cry with her--something I haven't yet done.  We cried and prayed together, which I think was very much needed at that point.  After a good night's sleep, we awoke rested and ready to begin a brand new day.  I love how God does that!
We have been given a new mission - to see Paige through one of the most difficult situations a child could face.  My uncle penned the following words, putting himself in my shoes.  I loved the message of it and wanted to share:

I am the parent of a child with cancer.  My primary occupation is no longer teacher.  I am now also a doctor, a nurse, a physical therapist, a nutritionist, a counselor, a spiritual advisor, a motivational speaker, and--at times--a Marine Corps Drill Instructor.  This career change doesn't pay well in terms of monetary compensation--in fact, there is none, but the rewards are substantial.  I get to see my child:
  • Graduate high school
  • Get married and have a family of her own
  • Succeed in whatever field she chooses  
That is more than any paycheck could ever supply.  Although my responsibilities have multiplied by leaps and bounds, my new job is really very simple: to see to it my child gets well.  That is my focus today and every day until she beats this, until we beat this.  It won't be quick, and it won't be easy.  There will be good days, and there will be bad days.

She will beat this.  We will beat this.

Absolutely!  God will heal Paige and see her (and our family) through this battle!  Mission: POSSIBLE!

Monday, February 10, 2014

Getting Very Real

"Your daughter has leukemia."  It has now been one month since those words changed our lives forever.  In an instant, our plans were scrapped--and it was time to take a closer look at the course God was laying out before us.  In this short time (that has seemed like a lifetime), we have experienced His abundant grace.  Grace that guides and protects us every day.  Grace that gives us strength to handle things that seem too difficult to bear.  As we finish induction and prepare for the next phase of treatment, things have gotten very real, very quickly.  Time for that strength to kick in to overdrive.

Reality Check #1: Tiring from multiple chemotherapy treatments and other procedures, Paige's body has become quite a bit weaker.  Yesterday while simply standing at the kitchen counter, her knees buckled, taking her to the floor.  She must have hit the tile harder than we all realized--as one knee caused her a fair amount of pain last night and all day today.  After exhausting every "fix it" method I could think of, it was time to get in touch with the on-call doctor.  End result: we now have some stronger meds that will help ease the pain and allow Paige to rest until we see her doctors tomorrow.

Reality Check #2: Paige's long, beautiful hair is thinning more and more every day.  In fact, the last couple of days it seems to be coming out nonstop.  She and I have joked that I should follow her around with a vacuum cleaner.  At first glance, it may not be extremely noticeable, as that girl has always had a mess of hair.  However, a closer look finds more scalp showing--and stroking her hair (as we all do when our kiddos are hurting) just helps more strands work their way out.

Attitude Check:  A tired, aching body and imminent hair loss have not deterred this unstoppable young lady.  Paige continues to have a great attitude, refusing to let me trim her hair in an attempt to make it easier on her.  She insists on keeping it as long as she can, saying this is "just life right now."  She has made it a point to pray each night for "strength and determination to keep fighting."  Pretty grown-up prayer for a 13-year-old girl, wouldn't you say?

God guides and protects us.  He gives us strength in difficult times.  A friend reminded me today that God knows every hair on Paige's head--and when each one of them will return.  God will be faithful as we travel this road and live out the plan He has for Paige's life--and that of our entire family.  It is sure to be nothing short of amazing!

Why, even the hairs of your head are all numbered.  Fear not; you are of more value than many sparrows.  Luke 12:7 

Saturday, February 8, 2014

Strength in Weakness

Truer words were never spoken.  For the last month, the soldiers here at Camp Lejeune (our household, not the Marine Corps Base) have gone through our own version of basic training.  Diagnosis. First round of treatments. Discovering a new way of doing life.

Next week we head into combat--the consolidation phase of treatment.  Though we will find out more when we meet with 'intelligence' (oncologists) next week, we do know that this next round promises to be more aggressive as it launches a strike to keep the cancer cells from regenerating.

Basic training (induction) began conditioning Paige's body for the many treatments and procedures she will undergo over the next 2 1/2 years.  Four rounds of chemotherapy, three bone marrow tests, and three lumbar punctures with additional chemo--not to mention steroids and other meds--made for one heck of a four-week initiation on her body.

Combat mode (consolidation) calls for total warfare against the cancer cells.  It is important to head into this cycle as strong as possible.  Unfortunately, this is easier said than done.

Over the last few days, we have seen a decrease in Paige's physical strength--like I said, that induction phase is intense.  She tires from small tasks and is moving around less.  Her leg muscles have weakened, resulting in trouble standing from a sitting position.  At one point yesterday, "Jello" legs took her to the floor, a scary moment for her (and me).

Though she may have trouble getting to her feet, it is a blessing that Paige has no problems walking other than she's slower than usual.  Drill Sergeant Mom quickly came up with a simple regimen we will be doing a few times each day.  We've got to stockpile as much strength as we can before combat begins next week.  She cooperated with everything I asked of her, telling me she wanted to get stronger and would work hard to make that happen.

Today Paige shared with me that after last night's family prayers, she prayed on her own--asking God to restore her strength and give her the determination she needed to fight this even harder.  Wow.  Tell me that girl isn't amazing!!  But He said to me, " power is made perfect in weakness."…  2 Corinthians 12:9

Paige's battle against leukemia requires a superhuman amount of strength, and she will not go through this alone.  Her family and friends stand ready to fight. The troops she has rallied to action seem to grow in number every day.  God has put everyone in position, and He knows how this will end--in victory!

He gives strength to the weary and increases the power of the weak.  Isaiah 40:29

Thursday, February 6, 2014

Inspiration through Affliction

When cancer hit our family, Romans 12:12 became very real words to live by.  We are joyful in the hope given in Paige's prognosis.  We must be patient as her body tires and weakens from various procedures and treatments meant to heal her affliction--because we know she will be healed. We are faithful in prayer, not only with our requests, but also with our praises for what God is doing in our lives.  Like I said--words to live by!

As we continue on the path to Paige's recovery, we become increasingly aware that this affliction is not an anchor to weigh us down, but a source of inspiration in our family--and beyond!  Below, Boyce and I share just some of the ways we're finding Inspiration through Affliction.


Boyce:  Inspiration comes from so many things.  Never would I have thought it would come in the form of cancer.

Paige has had a certain 'viral' effect on so many people.  I'm truly inspired by what has happened--especially at her school.  Students rallied from the start: wearing green in support of her, organizing a blood drive, designing and selling t-shirts.  Now they're organizing a 5K in her honor--it's simply amazing!

She has had a sort of calming effect on my bowling as well.  Keeping in mind what she is going through helps keep me from getting too frustrated.  Recently I bowled my highest series ever--297, 267, 246--an 811.  It awards me with a commemorative 800 ring--I've decided to order it in a ladies' style I'll give to Paige.  She was with me during that set, and giving her this ring gives me a chance to be with her throughout her life.  I hope I can inspire her like she does me.


Amy:  I consider myself blessed to be home with Paige during the first leg of our journey.  We grow closer and our relationship grows stronger every single day.  Her strength and determination inspire me just about every minute of the day.

These days, Paige gets worn out doing homework or taking a quick trip in the car--yet she doesn't complain.  She does what is asked of her and keeps on going, trying to do normal, everyday things we take for granted.  I'll be honest--it can be tiring being mom, nurse, cook (steroids make this girl HUNGRY!!), cheerleader, drill sergeant, and a host of other jobs I can't begin to list.  However, considering the battle my daughter is facing, there's no comparison.  I may tire, but her strength keeps me going.  Talk about inspiration!
Paige has been an absolute rock adjusting to her 'new normal.'  She faces treatments and procedures head-on and is nothing but cooperative with her doctors' requests.  I see in her a quiet determination to tackle these obstacles on the path to recovery.  Paige battles feelings of nausea and general ickiness without complaining.  She has begun to experience thinning hair and has even informed me--more than once--that the 'losing hair thing' is okay, that it will grow back, and that she'll probably just 'do the bald thing.'  This 13-year-old girl's acceptance of her illness and accompanying side effects inspires me to no end!


Impressive.  Incredible.  Inspirational.  These words don't begin to describe Paige's attitude, strength, and determination.  God is so much bigger than this affliction, and He is using our daughter to tell it to the world!

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

Monday, February 3, 2014

Getting it Off Her Chest - Literally!

There is always something to be thankful for…and last week's clinic day was one of those 'somethings!'  In addition to what her oncologist called "fabulous" blood counts, Paige's chest X-ray showed the mass in her chest is significantly smaller!   

Let's review--the initial X-ray revealed a mass 16 centimeters in size.  The front view showed something that looked like a giant pancake, and regular, off-the-street observers (her shocked parents) could not make out most of her rib cage, much less her lungs and heart.  The side view showed a small sliver of an airway--no wonder she had been struggling to breathe! 

Over the next week, Paige's respiratory function improved by leaps and bounds.  No longer did she rely on the nasal oxygen line as when first admitted to the hospital.  She was able to rest without being positioned at a 90-degree angle.  Despite her improved condition, a second X-ray showed the mass was still 13 centimeters in size, but the airway was becoming more visible.  The mass was shrinking--PROGRESS!!   

Fast Forward to last Friday--That day's X-ray revealed the mass was significantly smaller, so much so that they don't even measure it at this point!  The area is just considered "a little full" as the mass continues to shrink and break up!  Yesterday afternoon, Paige decided to show me just how much things have improved.  She was able to be completely flat on her back for over 10 minutes--without feeling like an elephant was sitting on her chest!  ANSWERED PRAYERS!! 

There is always something to be thankful for!

And the prayer of faith will save the sick…  James 5:15

Saturday, February 1, 2014

A Father's View

So excited to share some words from my husband!  Read on as he gives his take on things…

Talk about a roller coaster of emotions--that has been our lives for the past 3 weeks.  It was the worst diagnosis a father could ever receive, followed by the best prognosis a father could ask for.  That doesn't make it any easier.

Paige is great.  She's tough, strong, stubborn, and just plain not going to give up.  As parents, we were honest with her from the beginning.  The doctors speak to all three of us--it's her body, her illness, and she will now everything.  In the end, though, it's so hard watching her battle through this.

This last week has been tough.  I went back to work and wasn't there for her.  It's hard to get back to normal when normal isn't what she's dealing with.  I will admit I couldn't ask for a better group of co-workers, and they've been great with me through this so far.  

I get my Monday nights to bowl--which has been okay so far.  My mind stays on her, which helps me forget the little things that would normally aggravate me.

Through all of this, God has guided us, provided for us, and continues to lead us.  He has a plan--I don't know it, but it's there.  Paige has affected so many people, and she will help and guide many others.  "How?" you say.  Who knows?  God knows, and now it's time to sit back and let Him do His work.

As a father shows compassion to his children, so the Lord shows compassion to those who fear Him.  Psalm 103:13

Girl Time

"New Normal" - Week 3 - My husband returned to work, and Paige found herself 'stuck' with me. :)  I say that lovingly because let's face it--Daddy is probably a little more likely to pamper our princess (especially now), while Mom has more of a tendency to push her.  I think it's always been like this, but it balances out in the end somehow.

For our first week of 'girl time,' I thought about trying to stick to a schedule of some sort.  We take Jeremy to school each morning, come back and begin the day's medication regimen, and…it varies from there.  Not knowing how Paige is going to feel from day to day makes a regular schedule a bit difficult if not impossible.  

Unable to attend school due to a suppressed immune system from chemotherapy, Paige began working with her homebound services teacher this week.  That takes care of the mind being put back to work.  I've taken her out to a couple of stores for very short errands (mid-morning, no crowds)--getting her up and around gives her body a chance to retain some conditioning.

Toward the end of the week--maybe sometime last night after chemo treatment #4, I paused long enough to reflect on what this new 'girl time' really means for us:

  • Daily Care: The PICC line in her arm (used for blood draws & administering chemo) cannot get wet, and Paige is unable to do some things on her own.  This independent-from-birth child depends on me for assistance with shampooing, getting shirt sleeves on over this line, and many other things she would typically do solo.  She struggled with this 'invasion of privacy' the first few days in the hospital, but we've got a whole system down now and joke about it often!
  • Homework: Paige's homebound teacher works on lessons and procedures and leaves a few assignments for her to complete before the next visit.  Before the diagnosis (hereby referred to as BD), it was not uncommon to find us butting heads over homework.  Now, we look at notes together to check for understanding before she attempts an assignment.  We talk about stories and passages read, making connections to life BD and AD (after the diagnosis).
  • Providing Comfort:  Evenings can sometimes be a little rough on Paige.  Waves of "ick" feelings hit and quickly wipe her out.  A glass of Sprite, a few salty chips, and snuggling in her own bed usually put her back on the path to feeling better.  Particularly tough nights find me right there beside her, holding her hand or stroking her hair.  It's where I'm supposed to be.  
  • Random Conversations:  Whether it's teasing me about flushing her PICC line or talking about the inevitability of losing her hair, communication has changed between us.  It's actually improved.  Remember, she is thirteen!  BD, that meant occasional eye rolling, sighing, and general silence.  AD, we talk and laugh and "have moments" (her words, not mine).   

I can't help but be thankful for this new kind of girl time with Paige.  She needs me--but I need her just as much.  The "moments" we share are part of my daughter's incredible story--and I wouldn't miss it for the world!

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