Monday, August 31, 2015

A Month of Milestones

What a difference a year makes.  Last year at this time we were in the middle of a string of hospital stays.  This year we have taken advantage of some much-needed down time.  Summer is all but over, but I can't let August end without sharing some pretty significant milestones my beautiful daughter has reached.

Camp Periwinkle.  Early in the month, Paige and her brother attended a camp for the TCH oncology patients (and their siblings) funded by a generous organization that works very closely with our hospital.  For an entire week, my girl got the camp experience she had been missing so much.  You see, before all this leukemia mess started, she was a zip-lining, rock-wall climbing kind of girl.  I'm thrilled to report she is that girl once again!  Paige came home from camp with a few bruises--but they weren't due to dropping counts.  Nope, these bruises were little reminders that the fearless, adventurous girl inside is slowly but surely returning!

Birthday Number 15.  Paige and my husband have created a sort of tradition the last several years in the baking of her birthday cakes.  From giant peace signs to 'tie-dyed' cupcakes to Minions--they have worked together to produce some pretty impressive (and tasty) creations!  Last year was different.  Weak and recovering from a leg fracture, Paige simply wasn't up to baking.  Fast forward 12 months--and the tradition has resumed.  This year's design was a simple sheet cake with a beautiful multi-colored awareness ribbon.  The theme of simplicity carried over to her birthday gifts, with good reason--Paige couldn't think of anything she really wanted or needed.  Her words to me: "Mom, really I'm just happy to be here.  You know what I mean?"  Yes, sweet girl--I really do!

Starting School with Everybody Else.  Paige received homebound instruction the last half of her 8th grade year, as well as the first half of her freshman year.  She did rejoin classmates last January, but it was quite overwhelming, as everyone had already been there several months.  Their routines had long been established.  This year, she was healthy enough to walk through those doors on day one.  The afternoon of day two would have us at clinic for chemotherapy--but I'll be darned if my girl didn't come home and rest up so she could make it back to school the next day!

It's interesting how my perspective has changed since we began this journey.  A few years ago I don't think I would have truly understood what it means to find the joy in each day, to cherish every moment we are given.  I am thankful for the healing God is doing in Paige and for the work He is doing in me--and I want to honor those blessings every day I am given.

You make known to me the path of life; in your presence there is fullness of joy...   Psalm 16:11

Tuesday, August 4, 2015

Checkpoint - 18 Months

Fear not, for I am with you...I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.   Isaiah 41:10

In January of 2014, our family was rocked to its core when our beautiful daughter was diagnosed with leukemia.  Eighteen months later, we are still standing on the firm foundation of God's promises.  He has given us strength when we had none, hope on the gloomiest of days, and peace that really does surpass all understanding.

With just under a year remaining in treatment, Paige continues to follow her maintenance regimen--nightly and weekly oral chemo, monthly chemo infusions at clinic, monthly steroid pulses, and spinal taps every three months.  Though maintenance is much less harsh on the body than the intense chemo in frontline treatment, Paige still experiences side effects from time to time.  Neuropathy, presenting as 'shaky hands' from time to time.  Spinal headaches lasting up to a week.  Fatigue and nausea.   Thankfully, she has more good days than bad--which is definitely an improvement over last year!

This journey has been an incredible learning experience.  We realize how important it is to find the joy in every day.  Some days that joy is so evident, we can reach out and touch it.  Other days, we must seek it out.  We have discovered the many ways hope presents itself--whether through kindness shown by others or in our daughter's beautiful smile.  We have witnessed first-hand what it means to be patient in affliction (Romans 12:12).  Paige is getting physically, mentally, and spiritually stronger every day, and I thank God for the healing He has done in her--and the healing yet to come.

I leave you with a few photos from our summer adventures that say more than I could ever attempt to write.  Incredible.  Beautiful.  Abundantly blessed.

          

 

  

Our Superhero!

But they who wait for the Lord shall renew their strength...   Isaiah 40:31

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