Show & Tell Day - Paige Shares Her Writing

Before I entered the world of technology integration, writing instruction was my game.  Over the last year, the writing teacher in me resurfaced as I worked with Paige on various assignments during her homebound time.  I didn't realize how much I missed working with students in this capacity--getting them to realize their best writing happens when drawing from personal experience is priceless. 

Suffice it to say, Paige has experienced more than her share over the last 14 months--and she has used it to bring forth some pretty great writing.  Considering she spent today taking an English exam, I thought it would be fitting to share some of Paige's writing--with her approval, of course.  First up, a sonnet written early in the battle.  Following it is an essay written this winter, when we reached the end of intense, frontline treatment--and about a month before Paige returned to school.  It's a bit lengthy, but well worth the read.  No closing statement necessary--my girl gets it just right. 

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Love Will Win The Battle

The love our family shares is very strong;

Sometimes we need to let out a good cry. 

Together in this fight we all belong,

In the end we will spread our wings and fly.

The way my friends show their love is so dear;

They will send a cute message or sweet card. 

This reminds me they are still very near;

It also helps make tough days not so hard. 

God’s great love for our family knows no end; 

He proves this to us every single day.

He works through those who help my body mend;

When we need him most, all we do is pray.

Love all around will help me win this fight,

For my future will be healthy and bright.

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A Journey Like No Other

Friday, January 10, 2014. A day my family and I will never forget. Before I go on, let’s go back to December 2013. Coughs and chest pains sound like a normal kid in the winter, right? That’s what we thought too. Sleepless and scary nights barely being able to breathe revealed to us that an ER trip was necessary—ASAP! We waited and waited for an exam, and an x-ray showed a 16-centimeter mediastinal mass across my chest. Not only was the mass obstructing my airways, it was restricting blood flow to the point where I was as white as a piece of paper. Immediately I was rushed to surgery for a lymph node biopsy. They ultimately diagnosed me with T-Cell Acute Lymphoblastic Leukemia (ALL). Chemotherapy started that night—and our life as a cancer family began. Months of treatments, procedures, transfusions, and more weakened my body so much there were days I couldn't even get off the couch without help. It has been a bumpy road, but I am getting healthier every day. The lessons I have learned on this journey have taught me not to be afraid of what comes my way, but to embrace each challenge as an opportunity. 

Faith. I have learned how to trust God in good times and bad. I can celebrate the fact that after ten months of intense chemo, I am officially in the maintenance phase of treatment—finally! That is definitely a good thing! On the other hand, there have been some very frightening side effects along the way. 

At one point I experienced symptoms of a stroke. I lost the feeling in my right arm, my feet felt so heavy I couldn't walk, and my speech became very slurred—all within ten minutes. It turned out to be a neurotoxicity reaction from the combination of a spinal tap and a 24-hour high-dose chemo.

Steroid therapy brought another bump in the road. It weakened my bones so much that a simple slip caused a hairline fracture on my leg. Pain medication, physical therapy, and a walking boot helped with the recovery process. In moments like these, I knew that God would pull me through whatever he was taking me through. In the end, He did—and my faith grew even stronger.

Courage. There is a quote made famous by Bob Marley: “You never know how strong you are until being strong is your only choice.” This is a perfect description of my journey. Strength, courage, and bravery—I have learned it all along the way.   

For instance, when my hair was coming out, I didn’t know what to do other than cry. My long, thick, luxurious dark brown hair got to the point where it was thin, dried out, and stringy. Sometimes it made me look sicker than I felt. My parents called it “chemo hair,” but I called it my “old-man biker hair” (no offense to bikers anywhere). I knew what I had to do. It was time to let the hair go. I got it shaved off, and though it was difficult to do, I looked much healthier and even got used to it after a while. Now it’s easier for me to be comfortable around my friends and family. You can occasionally find us making jokes about my lack of hair—which doesn’t come easy for a 14-year-old girl. 

My latest adventure, radiation, originally brought fears and tears. Wearing a tight mask and lying on a table with your eyes closed seems scary, right?  No matter how frightening it seemed, this preventive measure was a necessary part of my treatment. I pushed through with hope and strength—in the end, the process wasn’t as bad as I thought it would be. Challenges like these helped me build a solid foundation of courage I will have the rest of my life.     

Friendship. I have learned to make new friends and keep the ones I have close. Even though my friends don’t understand what I’m going through, they can still help make it a little easier.  

One little boy I met has a fatal kind of fungal infection. In fact, there have only been a few other cases of this particular fungus, and no child has lived with it longer than five days. This warrior has gone over 50 days with it and is an inspiration to everyone. He has shown me not to be scared about little reactions when he is going through something 100 times worse. His strength is so much larger than his little body. 

In addition to strength, friends have shown me the importance of staying positive no matter what. A girl my age, who was diagnosed after me, fought a fungal infection that kept her in the hospital for eight months straight. She kept a good attitude about it and didn’t spend her days complaining. Just a few weeks ago, her family received the news that the fungus had shrunk enough to allow her to finally escape the walls of the hospital and sleep comfortably in her own bed. I am so happy for her and grateful for the lessons I learned about staying positive when times get tough.

Throughout this journey, I have seen loyalty in the way my best friend has stuck by me. She comes over often and keeps me up on gossip, which helps me feel a little bit normal. Tagging along on clinic visits helps her see what I’m going through. She taught me that friendship can hold two people together even in the toughest of times.      

With cancer comes fear, frustration, nervousness and more. However, I refuse to focus on the negatives. Treatment is rough, but my friends and family have been there for support every step of the way. Faith, courage, and friendship have been the equipment I needed to get me through this journey—and oh, what a journey it has been.

Finding a Purpose

The Lejeune Four joined the childhood cancer family in January 2014--when we were completely blindsided with Paige's leukemia diagnosis.  From that moment, our #1 goal became getting Paige well.  A crash course in everything from acronyms and procedures to medications and side effects--and the journey began.

Did I know about cancer before it came after my daughter?  Yes.  Did I have the slightest clue how it would affect us?  Absolutely not.  How it would change our lives from that point on?  No way.  My firstborn, my baby girl, my beautiful daughter--diagnosed with a life-threatening disease.  The good news in all of this was that Paige's particular type of cancer was treatable with a good cure rate.  Unfortunately, far too many families don't receive the same words of hope.  It's time for that to change.

Childhood cancer is the leading cause of death by disease in U.S. children under the age of 15.  Over 700 precious children are affected every single day.  Some display 'typical' symptoms, while others appear to otherwise be in good health.  It's heartbreaking and infuriating--and it makes me want to do whatever I can to help other families affected by this beast called cancer.  This sentiment is common among cancer families.  Between clinic, the hospital, and other activities, we get an up-close and personal look at the many faces of childhood cancer.  These faces become our call to action.  They become our purpose.

Recently we teamed up with a friend (whose son is a 10-year survivor of brain cancer) in an effort to give back to a place that has given so much to our families.  Texas Children's Cancer Center is home to an incredible team of doctors, nurses, and support staff who are on a mission to defeat cancer.  They also happen to do a fantastic job of caring for their patients and families.

Team Jake & Team Paige came together in the form of Striking for Gold, a charity bowling event that would benefit the cancer center.  Months of planning---not to mention the support of some pretty amazing people--came together in a remarkable way.  31 teams.  Silent auction loaded with great items.  Bake sale with yummy treats.  $7,850 to give back to a place that has given us so much.  Not bad for our inaugural year, huh?  We hope to go even BIGGER next year--and in the meantime, we will look for ways to help however we can!

A few weeks ago we had the opportunity to participate in a photo shoot asking the NFL and MLB to Go Gold in September for Childhood Cancer Awareness.  We met those currently fighting--as well as the families of other fighters who have earned their angel wings.  This special day was organized by a sweet lady with a true heart for these kids.  In fact, she's put together several benefits for many sweet children she loves as her own, and I look forward to joining her as I am able.

Too many families lose their warriors to subtypes of cancer that are still puzzling to even the best of the best.  This is why it's so very important to get the word out.  To fund much-needed research.  To save more lives.  Our kids deserve nothing less.

And let us not grow weary of doing good, for in due season we will reap, if we do not give up.   Galatians 6:9

A Change in Seasons

Wow!  Is it really the end of March already?!?  The recent change in seasons brought me to a realization--our journey has entered a new season as well.  Paige has now been back in school a little over two months and is well into the second cycle of maintenance.  I returned to work just over a month ago--adding that into the mix has been quite the adventure.  

Though we visit clinic less often in maintenance than in frontline treatment, Paige still takes chemo meds every day.  Here's the rundown: nightly chemo pills, weekly chemo pills, weekly antibiotic, monthly steroid pulse, monthly chemo through her port, and lumbar puncture with chemo every three months.  Got all that?  ;)

Monthly chemo infusions hit a little harder than in previous phases since they are now spaced further apart.  Thankfully, Paige is usually back to her sassy self within a couple of days.  The chemo pills she takes at home--both the nightly and weekly ones--have been increased over the last couple of clinic visits so her body can better metabolize and more effectively 'use' the medications.  Dosing is count-dependent, so we get lab work done every two weeks right now.  Paige just loves hearing she 'gets' to take more pills.  Her doctors have learned to stay on the other side of the room when telling her--ha!

Paige has now completed two steroid pulses in maintenance.  The first one caused ankle and knee pain we were able to manage.  Thankfully, the second one has been uneventful thus far.  Paige experienced a fibular fracture last year as a result of steroid-weakened bones.  We continue to pray specifically for her body to handle the 5-day steroid pulses each month with no issues.

Medical stuff aside, Paige enjoys being back in school.  She's continuing half-day instruction for another few weeks and will hopefully return to full days for the rest of the school year.  It's been a long time coming, and getting to that point will be cause for another celebration!

Our family is slowly adjusting to this new season.  We apparently had more of a routine down than I'd realized--but that's okay.  We just keep on taking everything one day at a time.  Thanking God for the healing He has done and the healing yet to come.  He is so very good.  Paige is getting healthier and stronger every day.  I couldn't ask for anything more.

Moving Along in Maintenance

Romans 12:12.  There's that verse again.  The words that found their way into my head and my heart 13 months ago.  The words that have become our way of doing life around here.

Three months ago, Paige reached the much-anticipated maintenance phase of treatment.  It was kind of a 'happy dance' moment, knowing that the intense chemo that slammed her body for almost 10 months was behind her.  The daily trepidation over low counts, inevitable transfusions, and possible hospital admissions had finally come to an end.  More than ever, we were joyful in hope.

Does that mean it's over?  Nope.  Not even close.  Paige's entire course of treatment will end up being about two-and-a-half years in length.  That would put her at the finish line sometime around May 2016.  However, the hardest part, the gut-wrenching part--the part when my beautiful girl was so sick and so weak that she could barely stand up on her own--is now behind us.    One day at a time, one step at a time, Paige patiently and quite courageously pressed on through this time of affliction.

So where are we now?  What is this thing called maintenance?  Paige's protocol for this phase is structured in three-month cycles.  Each cycle begins with a lumbar puncture (spinal tap), during which a small amount of spinal fluid is collected and replaced with a small amount of chemo.  This procedure is performed to make sure the spinal fluid is still free and clear of cancer blasts and usually results in a few days of rest and recovery for our girl.  It really wears her out.

In addition to the lumbar puncture, Paige receives a short chemo infusion through her port at the beginning of each month.  This particular chemo has a way of affecting the nerves, and Paige often experiences slight twitching of the hands and fingers at the end of a long day.  We've learned to wrap up schoolwork early in the evening, giving her the chance to call it a day before the chemo effects force her to stop.

Not only must she receive the monthly chemo infusion, Paige has two oral chemo meds she takes at home.  One is administered every night, the other once a week--which is a good thing, as the dose for the latter is 13 1/2 pills.  Yikes.  Add in a heavy-duty antibiotic three days a week and a five-day steroid pulse each month, and I think that covers the required medications.  Keep in mind we have meds for nausea as well as calcium and Vitamin D supplements to build up bones that were damaged from heavy steroid therapy during frontline treatment.

Oh yeah, and she's juggling school with all of this as well.  High school.  Advanced classes, no less.  Paige has been back in school about three weeks--half-days for now.  She's working to catch up on older work while keeping up with current assignments.  Still recovering from radiation to her brain (which can take a few months), some of the more intensive reading is tough.  She'll get headaches if we don't break it up into short segments.  It gets done--it just takes a little longer.  From the start, though, Paige has been adamant that nothing about cancer or its treatments will stop her from accomplishing things she wants to do.  That's my girl.

In a nutshell, our journey is far from over.  In fact, I don't know that it will ever really be over.  A fever still means an ER visit, with antibiotics and a hospital stay real possibilities.  Aches and pains will probably always place me on high alert.  However, all I have to do is look at my daughter, and I can see Paige getting better every day.  She is moving along in the maintenance phase, and we remain faithful in prayer for her complete recovery.  God is doing a mighty work here, and we will continue to give Him all the glory.

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete lacking in nothing.   James 1:2-4

Struggling to Quit Struggling

I'll be honest...the last few weeks have found me struggling.  Struggling with Paige being back in school, even if only for part of the day.  Struggling with worry over her upcoming procedures or everyday aches and pains and trying not to let fear take over.  Just plain struggling with everything.

A little over a year ago, we were floored by the news of Paige's diagnosis.  I've shared that we made the decision that very day to pick ourselves up off the floor and trust God's plan for Paige's life and His timing for her healing.  For the last 12 months, I've managed to hold it together--standing firm on faith and hope--as we made our way along this path.  Actually, it was God holding me together, holding me up when it felt like my knees could buckle at any moment.  So what in the world is going on with me now?  Why am I such a stinking mess?

The answer is quite simple:  I've come to find that I'm human.  Yes, human.  After running on faith, hope, and pure adrenaline the last year, it's become very clear that I do not possess superhuman powers.  Of course, I've always been aware of this fact--but now that Paige has reached the much-deserved maintenance phase and I've had a couple of minutes to stop and breathe...it's hit me.  And it's hit me hard.

I have had more worry, anxiety, and just plain fear running through me the last few weeks than all of 2014 combined.  Will Paige be okay back in a school setting?  What do those aches and pains mean? Are they normal--or something else?  Now that chemo is spaced further apart, will the cancer cells stay away?  I had to stop and remind myself that these things are just not in my control.  Somewhere along the way, when I stopped to breathe, did I take my eyes--and my focus, for however brief a time--off of God?   I could feel worry and fear trying to take over and knew I couldn't beat them on my own.

And then--I had 'a moment.'  Really, it was a combination of several moments.  Every song I heard, every quote or scripture I came across--all served to remind me to get my focus back where it needed to be.  God was gently turning my eyes back to Him.  It is by His grace, His mercy--nothing else--that we are still a family of four.  That we have this time to figure out our new way of doing life.  That nothing on this earth is guaranteed and to treasure that with which I have been blessed.  Message received.  I will continue this journey one step at a time, one day at a time, placing my faith and trust in the Almighty God.  That, my friends, is more than enough.

...the God of all grace, who has called you to His eternal glory in Christ, while Himself restore, confirm, strengthen, and establish you.   1 Peter 5:10

First Day of School!

Today started off like any other morning over the last few months.  Paige and I dropped Jeremy off at school and wished him a fabulous day.  From there it was usually back to the house for breakfast and schoolwork--but today was different.  Today was extra special.  Today was my girl's first day of school!

Yes,  it's January.  School has been in session about 5 months now, and Paige has been working very hard to keep up with classwork while undergoing some pretty intense chemotherapy.  So, why is today such a big deal?  This is Paige's first day to attend classes at school in over a year!

We've been striving for this day for a long, long time--so why am I such a ball of nerves over this?!?  To my defense, we have been joined at the hip for the last year.  I have been with this girl through every chemo treatment, procedure, MRI--you name it.  I have been her physical support when she was too weak to get up from the couch on her own.  I have comforted her through nausea, pain, tears, and fears.  Getting that girl well again has been my primary focus the last 12 months.

Whew--that was quite the rundown!  Time to go back to the "I've-got-it-all-together" version of myself.  I know this is a good thing, for Paige and for her mom.  She went through all of the 'normal' kid stuff last night and this morning.  Deciding what to wear.  Difficulty getting to sleep.  First-day jitters.  Questions about just how different high school would be.  Stuff every kid experiences.  It may sound crazy, but she actually seemed okay with all of those feelings--because they were normal.  She's been needing this time, and it's finally here.

Her stamina isn't quite where it needs to be to attempt full days just yet, so we are beginning the transition with partial days.  Paige will attend her first 4 classes--allowing her to be there for the all-important lunch period with friends--and continue homebound instruction for the remaining 3 classes until she's able to make it the entire day.  We're not putting any kind of timeline on it.  It depends on maintaining counts, continued good health through treatments, and a whole host of other variables--but that's okay.  If I've learned anything over the last year, it's to take things one day at a time.

Our journey of faith continues.  Paige still has about 18 months left in her treatment, but having her health at the point where it's safe for her to be back in school for any amount of time is a giant milestone.  I couldn't be more thankful.

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

Journey of Faith - One Year In

Today marks one year since this journey of faith began.  One year since we heard the words no parent ever wants to hear: Your child has cancer.  One year since we were brought to our knees, crying until the tears would no longer come.  One whole year.

Quick review: Paige was sick.  Very sick.  A lingering cough and mild breathing issues quickly escalated into severe respiratory distress.  A trip to the emergency room resulted in a 9-day hospital stay.  A preliminary pneumonia diagnosis was quickly changed to cancer.  Cancer.  One year later I still have trouble grasping the sometimes harsh reality of this new way of doing life.

Don't get me wrong--there's much to celebrate, and I'll get to that shortly.  I've got to be honest, though.  This week has been rough.  Really rough.  Thinking about where we were at this time last year knocks the wind out of me if I linger there too long.  Let's just say God's perfect timing led us where we needed to be that night.  Paige fought back tears last night when she came across some goofy photos we had taken with the iPad during last January's long wait in the ER, thinking we'd be home in a few short hours.  When memories of that traumatic time hit, they hit hard.  For the last 7 nights, Paige has been awakened by nightmares that force her to relive the events of last year.  She wakes up sobbing and gasping for air, feeling like she can't breathe.  We talk and pray through it, taking lots of deep breaths together as she settles back down.  The fact that I can't make this stop cuts me to the core.  I can only pray that this too shall pass.

As rough as this week has been, it's also cause for joyful celebration.  Paige is here with us, getting stronger every day.  After several bumps in the road, she finally made it to the maintenance phase of treatment and will soon make a return to school--something we couldn't imagine several months ago.  My daughter's strength and courage never cease to amaze me.  I have seen this girl push herself through treatments and side effects that would have even the toughest adults on the floor.  I have watched her grow stronger physically, mentally, and spiritually, trusting God to bring her through good times and bad.  She has set the bar pretty high for the rest of us.

Paige's journey is not a solo mission.  There's a saying in the childhood cancer family that "no one fights alone."  Truer words were never spoken.  God has held her in His mighty hands from the very beginning.  Family, friends, nurses, doctors, and countless others have linked arms with us in this fight.   She is not alone.  We are not alone.  Together we stand firm on faith, trusting in God's perfect plan for Paige's future.  For our family's future.  Hope is a pretty amazing gift, don't you think?