Sunday, September 28, 2014

Hope & Healing

Have you ever tried to see how long you could hold your breath?  I remember childhood challenges to see who could do it the longest--sometimes it was underwater in the swimming pool, other times it was just several of us standing there watching each other.  Silly?  Yes.  A battle for bragging rights?  Absolutely.  Those 20- to 30-second victories were simply awe-inspiring.

Fast forward 30-something years.  I think I've set a new personal record for holding my breath.  Forget timing in seconds--let's try about 9 days, starting when Paige received the first of three high-dose chemo administrations--the 'make-up' work in her leukemia treatment.  24 hours of chemotherapy.  Five days in the hospital.  Constant monitoring and caution for several days at home.  Yes, this morning I was actually able to exhale.

The first attempt at this four months ago resulted in a trip to the ER when Paige experienced stroke-like symptoms.  Thankfully, she rebounded quickly--even joking later that evening that her motto was "go big or go home."  I distinctly recall reminding her that we couldn't go home because she kept going so big. :)

Needless to say, we were all a bit--okay, a lot--anxious about trying this again.  A few adjustments were made to the treatment, and the leukemia team had Paige's safety and well-being in mind the entire time.  We trust their judgement--they've shown true compassion and care for Paige and our family from the start.  God put them on our path for just this purpose.  I called on every prayer warrior I know, and we got to work.  1 Thessalonians 5:17 tells us to "pray without ceasing"--and that's what we did.  Prayer works, my friends.

How do I know?  Hospital stay went as planned.  Chemo levels cooperated at each check.  Anti-nausea meds worked well.  Fatigue was manageable.  Best of all?  Fear and anxiety about what might happen was nowhere in sight.  Was it somewhere in the back of our minds?  Of course.  It's tough to forget one of the scariest days in your life.  Was it taking over?  No way.  We continue to trust God's plan for healing our girl.  There were--and still are--too many reasons to celebrate and give thanks.  

After a few days at home, the major fatigue began to subside.  Paige's counts were good at our follow-up clinic visit--she was smiling and joking around with her doctors, so I knew she was feeling better.  We even made it out for a few simple errands later in the week, enjoying lunch out and giving Paige a chance to show off Mom's handiwork on her nails.

Today, however, was the absolute best day since we've been back home.  Coincidence that it also happens to be a Sunday?  Nope.  All four of us attended church this morning--between low counts and hospital stays, that hasn't happened very often in the last few months.  We were able to visit and pray with our pastor after the service.  It was a great start to the day, and it kept getting better.

Paige and Jeremy worked together to make pizzas for their lunch, laughing as they piled mountains of cheese on their creations.  Deciding she wanted to continue the Italian theme for dinner, Paige made homemade alfredo sauce to accompany the pasta, broccoli, and grilled chicken she'd requested.  She even took care of plating the food--I wish I'd taken a quick picture, but the food disappeared too quickly!  Dessert consisted of cupcakes she baked with her dad and iced with her brother.  Can you tell her appetite seemed to be okay today?

Yes, I've finally been able to exhale.  I'm not holding my breath anymore in anticipation of what might happen.  I'm trusting God to take care of my girl.  I'm thanking Him for her healing and praying for her safety.  And I'm cherishing every single second of days like today.

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.   Romans 15:13

Wednesday, September 17, 2014

Facing the Giants Again

Mid-September.  We were hoping by now Paige would be finished with all of the IV chemo and well on her way to maintenance.  That was our plan.  As we have learned many times along this journey, our timing doesn't always match up with God's timing.  As for Paige's chemo, we have some catching up to do--starting tomorrow.

Tomorrow is the first of 3 planned hospitalizations with high-dose chemotherapy.  When I say high-dose, I mean high-dose.  Two "big ol' bags" (as Paige says) of chemo administered over 24 hours.  About five days in the hospital.  Lots of monitoring at home afterwards.  This is "make-up work" in her treatment--pardon the school reference, but I am a teacher after all!  After a very scary reaction the first time through this--way back in May--Paige's doctors have decided this particular drug is too important in leukemia treatment not to try again.  After much discussion with the leukemia team, which includes one of TCH's original researchers, they have put together a plan they feel will be safe and effective in continuing Paige's treatment.  These doctors have shown incredible compassion in caring for Paige--and the rest of our family--and I am certain God is giving them the wisdom and discernment they need to take care of my daughter.

Are we anxious?  A bit, yes.  But as we have done all along, we are trusting God and praying.  Praying that the chemo will get in, do what it's supposed to do, and get out ASAP.  Praying for peace and calm assurance.  Praying that God will continue to equip Paige--and our whole family--with the physical, spiritual, and mental strength we need to get through this next part of our journey.  As my uncle reminded me this evening, we know who holds tomorrow--and we know who holds Paige's hand.

Yes, we figured we would be closer to the maintenance phase by now.  However, our sense of timing really doesn't matter in the grand scheme of things.  God has a perfect plan, and He continues to amaze us with this incredible testimony He is creating in Paige.  She is a warrior, fierce in her determination to win this battle.  I have no doubt she will be victorious.  An overcomer.  Isn't she already?!?

A sweet friend and co-worker sent me the following excerpt from a devotional she came across--I thought it was a perfect close to this post:

"Not to the strong is the battle,
Not to the swift is the race;
Yet to the true and the faithful
Victory is promised through grace."

Wonderful Week at HOME

There's no place like home!  There's no place like home!  After a 7-day 'staycation' at the hospital waiting on counts to recover, Paige and I have enjoyed some much-needed time at home with Jeremy and Boyce.  Yes, it meant a delay in treatment.  Yes, we are more than ready to be done with this part.  But I've got to say--it was amazing having our family all under one roof again.

Eating dinner together at home.  All four of us.  

Taking in a couple of movies at the actual theater.  Off-peak times, of course--can't take any chances right now.  All four of us one time, just the girls for the other.

Kitchen time with the kiddos.  Baking and frosting cupcakes.  Paige loves to bake, and this was the first time in quite a while she's been up to it.  She and Jeremy did the majority of the work while Mom supervised.  Yum, yum, yum!  A few nights later, Dad helped Paige and Mom prepare dinner--it was Paige's special request of King Ranch Chicken.  Delicious!

Game time.  We are suckers for board games.  Always have been.  From Life to Connect Four to Scrabble--we love 'em all.  Having time to just hang out and play games was something we all needed.

These things all seem very simple, very ordinary.  And I suppose on some levels they are.  But as our family has come to find out over the last 8 months, any time we can spend together is extraordinary.  Priceless.  Cherished.  And the best part--there will be much more time together.  The best is yet to come!

Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.   1 Thessalonians 5:18

Monday, September 8, 2014

Another Hospital Stay in the Books

Paige is in remission.  She's been cancer-free since early February.  This is nothing short of a God thing.  The mass that seemingly appeared out of nowhere and the cancer cells that developed in her bone marrow--GONE.  Every day I thank Him for taking the disease out of her body--but that's not the end of it.  There is still more healing to be done.  Paige's body must be 'prepped and primed' to prevent those bad, bad cells from ever coming back.

What does this mean?  Months of intense chemotherapy, which we are getting closer to finishing.  Fatigue.  Muscle weakening.  Nausea.  Adverse reactions.  Delays.  The list of 'yuck' factors Paige has dealt with is quite extensive, yet she faces each obstacle with courage like I've never seen before. She is fierce.

The latest hurdle came about 9 days ago.  I'd finished bedtime prayers with the kiddos and was working on a blog post when Paige called me to her room.  She had the chills.  Was fine an hour earlier.  Not now--she was spiking a fever.  A short time later we were on the road to TCH, knowing what would lie ahead.  Fever plus low counts meant antibiotics and a hospital admission.

Early in our journey, Paige would get upset about the ER trips.  Fortunately (or unfortunately, I suppose), we've now done this a number of times and have quite the routine established.  It's a pretty calm process--discover a rising temp, phone the on-call docs, grab our pre-packed 'get outta here' bag, and hit the road.  We pray as we are pulling out of the driveway and talk the whole way there.  Not scared.  Not even all that anxious.  We know she's going to be well-cared for.

This particular hospital stay lasted 7 days--2 days less than the one a month ago, so that was nice.  Blood cultures all came back negative, and the fever subsided after just a day or two.  The thing that kept us there this time (as in previous admissions) was her next-to-nothing ANC count.  This magic number tells how well she can fight off infection and would keep us there until doctors felt it was safe for her to go home.

Paige felt pretty good during our stay this time around and was honored to meet one of her heroes, Dr. Jennifer Arnold!  She surprised Paige with a visit to our room, and my girl could hardly stop smiling--it was wonderful!  Paige and I also participated in a ribbon-tying ceremony commemorating Childhood Cancer Awareness Month.  It was really special, and I'm so glad we were able to attend.

After transfusions of platelets and red blood cells, a week's worth of antibiotics, and just playing the waiting game, Paige was released to go home.  We're grateful for a few days to rest and recover in the comfort of our own home.  Next up--hospitalization for chemo when her counts are back where they need to be.  I have no doubt Paige will face this just like she does everything else--with strength and bravery that is just plain inspiring.

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

Monday, September 1, 2014

Spreading the Word

September is Childhood Cancer Awareness Month.  You may have noticed gold ribbons appearing all over social media as part of the campaign.  I changed my profile pic to honor not only Paige and her fight against leukemia, but also to honor other kiddos past and present who have taken on battles of their own with strength and courage that is nothing less than inspiring.

I am also on a mission to become more informed.  The infographic below (courtesy of Alex's Lemonade Stand Foundation) breaks down some of the facts and figures related to childhood cancer.  They are downright mind-boggling.

Eight months ago, childhood cancer waged a battle on my family.  Against my daughter.  I watch her fight back with everything she has, treatment after treatment, delay upon delay.  Strong in faith and hope, she presses on--and we are right beside her every step of the way.  Our family is blessed in that Paige's type of childhood cancer can be effectively treated.  Years of research and various treatment studies corroborate this.  Paige will get past this 'blip' on the radar and go on to lead a healthy life, sharing her incredible testimony along the way.

Not every family receives such promising news.  There are many who lose their warriors to subtypes of cancer that are still puzzling to even the best of the best.  This is why it is so very important to get the word out.  There is still research to be done.  There are many lives to be saved.  Our kids deserve nothing less.

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