Monday, March 30, 2015

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. 


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.


A Journey Like No Other

Friday, January 10, 2014. A day my family and I will never forget. Before I go on, lets go back to December 2013. Coughs and chest pains sound like a normal kid in the winter, right? Thats 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 its 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 wasnt 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 dont understand what Im 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 didnt 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 Im 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.

Thursday, March 26, 2015

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

Wednesday, March 25, 2015

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.