Radiation Rewind

December.  It's the most wonderful time of the year, right?  Had this been a 'normal' December, I would have been pulling out the cute holiday t-shirts for school, scheduling a quick family photo session for the perfect Christmas picture, and coming up with all kinds of activities and outings for my kiddos to keep us occupied over the break.  By now you can guess that this December has been anything but normal.

December 1 - 5:  First week of cranial radiation treatments.  Paige had gone through the simulation a few weeks earlier, so she knew what to expect.  However, the newest leg of this journey had us all a bit on edge.  Of course, Paige was amazing--as usual.  On the very first day, she checked herself in and didn't look back when the technicians came to get her.  I think she was on a mission to get it over and done--I was actually glad she didn't turn around that first day, as this momma had some very watery eyes.  Watery, teary--take your pick. 

Thankfully, radiation is a relatively quick procedure.  It actually took longer to get her into position than it did to administer it.  In fact, Paige estimated the total radiation time at just over 20 seconds.  These short appointments were very different from those long clinic and chemo days earlier in her treatment.  More than anything, this stuff wore Paige out.  She was more fatigued than I'd seen her in quite some time, and she experienced headaches (this was to her brain, after all) that we were able to get under control.  The two-day break of the weekend gave Paige a chance to really, truly rest and let her body prepare itself for the following week.

December 8 - 10:  The last few days of treatments were basically a repeat of the previous week.  Fatigue and headaches continued, but these side effects were still manageable.  We had a countdown going, and it was pretty incredible seeing Paige come out and ring the bell after her eighth--and final--radiation treatment!  What an awesome way to wrap up this leg of the journey!

December 16: Still feeling the effects.  It's now been almost a week since Paige has received radiation.  While the headaches have subsided, the fatigue continues.  Her doctors said this could last a little while, but we've learned to be patient through this process.  We take it one day at a time.  One victory at a time.

It does look like radiation is going to take Paige's hair.  Most kiddos get this treatment at the end of the last phase, when they're still pretty bald.  Delays and make-up doses of chemo gave her hair the chance to start the growing process.  In fact, my girl had a nice little covering of hair working for a while--and then it hit.  That weird feeling on her scalp she refers to as her hair 'jumping ship.'  Again.  To say she is upset about this turn of events is an understatement.  The first time around devastated Paige--her long, beautiful hair came out little by little, day after day, until it was all gone.  The second time she had the littlest bit of peach fuzz until a series of very intense chemo treatments took it away.  This time was different.  She was getting more comfortable, more confident.  While it's not something Paige wanted to experience a third time around, I've gotta say she rocks the look--and she knows it!  Besides, that hair will come back before too long.

Come to think of it, this really is the most wonderful time of the year.  My girl knocked out radiation treatments before Christmas, she's getting healthier and stronger every day, and she is here.  Can't ask for anything more than that.

More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.   Romans 5:3-4

Giving Thanks EVERY Day

Giving thanks always and for everything...   Ephesians 5:20

Thanksgiving Day 2014.  Parades.  Family.  Too much good food.  Giving thanks for our many blessings.  Sounds pretty typical, right?  It's been our norm for as long as I can remember.  This year, however, was different.  For our family, thankfulness took on a whole new meaning.  Hit a whole new level.  I knew it was going to hit me at some point--I just didn't realize it would hit when I was praying before our meal.

Lord, we thank you for this day.  We thank you for this time to gather together as a family... Then I lost it.  I held on to Paige and eventually made it through what seemed like the longest prayer ever.  I am not usually one to find myself at a loss for words--in fact, I had plenty to say.  I was just completely overwhelmed.  Our gathering was at home, not a hospital room.  Paige was able to eat--anything she wanted--and didn't have to add anti-nausea meds to the mix.  There was eating.  There was laughing.  And my girl was right in the middle of it all.

I have always been thankful for the blessings God has given me, but this year has taught me what it means to be truly, wholly thankful.  Not just one day, but every single day.  Thankful for God's love, mercy, and amazing grace--that I have seen in abundance over the last ten months.  Thankful He gave me an incredible family growing in strength and faith all the time.  Thankful for the healing happening in my daughter--and the hope for her spectacular future.

The Lord is my strength and my shield; in Him my heart trusts...and with my song I give thanks to Him.   Psalm 28:7

Crossing a Bridge

I like to run.  There's a shirt I've seen online that says something to the effect of, "I run to burn off the crazy."  Considering the events of the last 11 months, those words ring very true for me.  Running gives me a chance to get moving, take in the beauty of God's creation, and just breathe.  It really does help burn off the crazy, I'm-gonna-lose-it feeling that can try to take over sometimes.

There's a wooden bridge on my usual path that for some reason fascinates me.  I've paused several times to take a quick picture before crossing it.  There's nothing special about the bridge.  The view around it is quite beautiful, but it's just a wooden bridge--or is it?

Bridges take us from one place to another--sometimes from the familiar to the unknown.  There is no way of knowing exactly what lies ahead.  Over the last several months, I've thought of my little bridge as representative of various milestones in Paige's treatment.  Successful recovery from procedures.  Smooth administrations of intense chemotherapy.  These milestones are exciting because they put us one step closer to the finish line, but they can also bring new anxieties over the unknown.  Just gives us more to pray about, I suppose--and a chance to see some pretty amazing glimpses of hope.

A couple of weeks ago we crossed another bridge on this journey when Paige officially began the maintenance phase.  Were we ready for this?  Absolutely.  Almost 10 months of medications that all but destroyed her body in the name of saving her life, it was time to take in some new sights along our path.

The maintenance phase will be the longest leg of this journey, lasting just under two years--yes, two more years.  It goes in three-month cycles, during each of which Paige will receive one lumbar puncture sending a small amount of chemo into the spinal fluid, three short chemo infusions through her port, monthly steroid therapy, and two oral chemo medications--one nightly and one weekly.

Yes, our travels are far from over.  This medication regimen is extremely important in working to rid Paige's body of any tiny, hard-to-detect leukemia cells that may be waiting to cause trouble further down the road.  A bright spot of this very scheduled regimen is that it won't cause Paige's counts to tank like the more intense medications did--meaning she should be able to begin a transition back to school sometime after the first of the year.

Before we get too far into maintenance, Paige must complete 8 treatments of cranial radiation.  Because leukemia cells like to hide in spinal fluid--which leads to the brain--this is considered a preventive measure.  Thankfully, she has never shown any evidence of disease in the spinal fluid, so she is receiving a smaller number of treatments.  The simulation was a few weeks ago, and actual treatment begins next week.  This will be one of the few treatments Paige has to receive without me right there by her side.  I've gotta say--this momma doesn't like that one bit.  I know it's in the name of safety, so it's yet another time I've got to remember she is never alone. God has been with her since this all began, and He will continue to be there every step of the way.

We have crossed the bridge into maintenance and press on toward that finish line.  Yes, it's a couple of years away--but it's there waiting for us nonetheless, and we couldn't be more thankful.

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

Learning How to Pray Differently

Prayer.  Spending time talking (and listening to God).  For as long as I can remember, it's been part of my life.  Of course, the way I pray has changed over the years.  This goes for the rest of my family as well.

Prayers of a child.  These standards taught me to talk to God--the listening part came later on.  Every dinnertime found me saying the usual--God is great, God is good.  Let us thank Him for our food.  Bedtime had its assigned prayer as well--Now I lay me down to sleep, I pray the Lord my soul to keep.  When Paige and Jeremy came along, they learned the routine as well.  These prayers were important and served their purpose.  God heard every one of them--after all, He hears the prayers of all His children, big and small.  The day just comes when you realize it's time for more.  Time to really talk to God.

Prayer grows up.  As I grew up, so did my prayers.  I ditched the 'scripted' routine and focused on what was most relevant to me at the time.  Health and safety.  Wants (that at the time I considered needs).  The future.  We talked to the kids several years back about revising their prayer rhetoric, and it followed a similar pattern.  Keep us healthy and safe.  Please let me do well on a test.  We all got really good at talking to God--but that listening part was still a challenge.  Sure, I'd do okay sometimes.  Other times that I-can-control-all-things part of me would take over.  Then one day, it happened--things got a little too real and a whole lot out of control, and there was nothing I could do to fix it.

Prayer gets real.  My prayer life saw its most significant change about ten months ago--around January 10th.  It was then I discovered a real, crying-out-to-God, on-my-knees kind of prayer.  As parents, we do whatever is in our power to keep our kids safe, healthy, and happy--yet some things are beyond our control.  Take cancer, for example.  Even ten months into this journey, it still seems like a bad dream--and I'll wake up one morning with everything the way it was.  It's nice to think about, but I know that won't happen.  Paige's diagnosis rocked our world in more ways than I can count, but it also gave us strength beyond measure.

One of those boosts--actually, jolts--of strength came in our prayer life.  January 10th had us on our knees--physically, emotionally, and spiritually.  We cried almost uncontrollably upon hearing Paige's diagnosis.  When the tears could no longer fall, we cried out for her healing.  And then we did what is so hard for many of us to do--we gave it all over to God.  Our worries, our fears, our absolute trust in His plan for Paige.  I remember telling Him that I knew I couldn't fix this, that I couldn't control what was happening with our daughter.  That we were giving the whole situation completely to Him, knowing He had a plan for Paige we will never fully comprehend.  And I did what I should have done all along.  I sat still and listened.  His response was an overwhelming, mercy-and-grace-raining-down-on-us kind of thing.  And it changed my life.

Prayer becomes specific.  Paige's illness taught me to pray differently.  In many ways, I think I've gotten better at it.  Not only am I specific in my prayer requests (with the cancer chaos, it's become a necessity), I am specific in giving thanks.  For Paige's healing.  For being able to be by her side every step of this journey.  For holding our family together when things could very easily have come unraveled.  The kids have learned as well--praying for our clinic and hospital friends by name (and situation if they know it).  For peace and comfort for friends who have recently lost loved ones--that "they will know God is there with them."  I love that my kids have hearts like this.

Prayer.  As long as I have breath, I will give glory and honor to God for the amazing life He has given me.  Through calm waters and stormy seas.  He is mighty.  He is faithful.  He is worthy.

You will seek me and find me, when you seek me with all your heart.   
Jeremiah 29:13

Romans 12:12 Revisited

Late October 2014.  Almost ten months in on this journey, and we are crossing another bridge.  A very significant bridge.  If her counts cooperate, Paige will begin the maintenance phase of treatment tomorrow morning--complete with a spinal tap and short chemotherapy infusion.  This final phase will be her 'hangout' for just under two years.  Seems like a great time to revisit the verse that has come to epitomize how we do life in this family.  

Be joyful in hope.  Joyful, ecstatic, overjoyed.  Paige is healing.  Did you catch that?  She is healing!  To say we are thankful for the work God is doing in her life is the understatement of the millennium.  We thank Him every day for the healing He has done.  For the healing that is to come.  For just a glimpse at this miracle in the making, take a look at the before and after.  A giant 16-centimeter mass blocked air and blood flow--it is GONE, my friends.  Out of here.  Leukemia cells have been banished from her bone marrow.  Treatments and procedures, side effects and hospital stays.  Over the last nine months, Paige's body has tolerated things that would leave most adults in a puddle on the floor, yet she doesn't dwell on that.  Nope, not this girl.  She's too busy looking ahead to the future.  Her future.  Paige plans on becoming a pediatric oncology nurse.  She has such a heart for kiddos going through similar experiences--I have no doubt she will be amazing.  How's that for hope?  Makes this mom pretty stinkin' joyful!

Patient in affliction.  Healing takes time.  Patience.  Faith in God's timing.  Trust in His perfect plan.  I'm here to tell you--it's not an easy task, not by a long shot.  Seeing my daughter struggle to breathe, her body blasted and weakened from various treatments, and just knowing she was in the fight of her life has been nothing less than heart-wrenching at times.  Just when it feels like this journey is taking too long, that it needs to be done now--I have to take a breath and remember just who is in control.  Remember just how blessed we really are.  It's times like this when that peace that really does pass all understanding takes over.

Faithful in prayer.  Every day.  Every night.  All the time in between.  We thank God for putting Paige on the road to healing.  We thank Him for making her stronger.  For making our family stronger.  We pray for healing for hospital and clinic friends whose paths have crossed with ours--and peace and comfort for their families.  Prayer works, my friends.  God makes miracles happen every single day.  Our miracle's name is Paige.  Take a look at her amazingly beautiful smile and try to tell me otherwise.

Hope.  Patience.  Faith.  It's how we do life.  How we will continue to do life.  God is good--all the time.

Month Nine

This week we hit the 9-month mark on the journey to getting our girl well.  There are times it feels like we've been on this path for eons, while other times it feels like we just heard the news yesterday.  Talk about an emotional roller coaster.  There are days I have to stop and catch my breath and thank God she is here with us.  My daughter.  My baby girl.  The child I carried for a little over nine months.  The hero I have before me today.

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2000.  Nine months then.  When this precious child was forming in my ever-growing belly, it was a time of excitement.  Ultrasounds giving us a glimpse of a beautiful face.  Hours poring through books telling me what to expect.  I was expecting, after all.  Baby showers with all the trimmings.  Anticipation of the big day.  Our lives forever changed.

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2014.  Nine months now.  Devastating diagnosis followed a joyous holiday season.  X-rays, CT scans, and MRIs gradually revealing the shrinking and subsequent vanishing of a large mass that was suffocating my daughter.  Clinic visits, procedures, and chemo administrations.  No way to predict or fully prepare for what was to come.  Benefits and fundraisers demonstrating incredible love and support.  Taking one day at a time while keeping our sights on the finish line.  Learning what it means to fully trust in God's plan, timing, and amazing grace.  Our lives forever changed.

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Nine months into this journey, and we are finally nearing the end of the intense portion of Paige's treatment.  One more high-dose chemo administration.  Cranial radiation to follow.  Up next is the maintenance phase, which will cover a span of about two years.  Compared to the giant roller coaster we have ridden thus far, I'm hoping the next ride is more akin to a kiddie park version.  Paige will still receive some chemo through her port, though in smaller doses.  Oral chemo (pills), steroid therapy, and occasional spinal taps will continue to be part of the treatment regimen.  It sounds like so much, and it really is--but for a girl who has battled some Goliath-sized giants over the last nine months, it's all in a day's work.  Paige is currently in remission and has been since February.  Cancer-free (there's that catching my breath thing again).  Keeping her that way requires another couple years of maintenance phase therapy.  In the meantime, I will never stop thanking God for the healing He has done in Paige.  I will never stop thanking Him--praising Him--for the healing yet to come.  Look at this smile--this girl deserves nothing less.

Before I formed you in the womb I knew you...   Jeremiah 1:5

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

Emotions Run High

Two down, one to go.  Paige made it through the second hospital stay with 'make-up' chemo pretty well.  Her body cleared the excess chemo on time, and she's been more tired than anything else.  As I type this, we are at home (yay!!) getting ready to head back to clinic tomorrow for a check-up and possible blood transfusion.  Her hemoglobin count was a bit low when we were discharged on Monday, so it won't be too surprising if she needs a boost.

Four hospital stays in two months.  At this point, our routine is pretty set.  Pack anything and everything--from clothes and toiletries to snacks and water (yes, even 'good' toilet paper).  We walk in prepared.  I go to work decorating her door--placing signs & scriptures according to her directives.  Paige and I work together to jazz up the windows.  We love those crystallizing glass markers!  Days are filled with homework, artsy stuff, games, and visits from family and friends.  Because hospital cuisine isn't exactly what Paige craves (ever), I am also the runner to and from local food establishments.  I never know what she's going to want--heck, she doesn't even know until it hits her. Chemo does some crazy things to the taste buds, but I'll do what I have to when my girl feels like eating.

Evenings at the hospital find us watching the sunsets.  I love the windows in the rooms--there are actually some really beautiful views of the sky from our home on the 9th floor.  Paige and I usually bundle up in blankets (at least I do--she keeps it like a meat locker in there) and just chill out.  Lately our chill time has turned into chat time.  I must admit--I'm kinda liking that part.

Last week's talks were a little different.  Struggling with emotions.  Wrestling with thoughts.  These are just a couple of the take-aways.  Throughout this journey, Paige has rarely let go of her emotions.  She keeps them in check most of the time--in spite of the fact we encourage her to 'spill.'  She's definitely not like her mom in this respect.  I have been known to let everyone know just what I'm thinking and feeling at any given time.  What can I say--the girl has her own way of dealing with things.  It's all good.

Hearing about one of the little ones from our floor who was moved down to the ICU hit my girl pretty hard, though.  The words began to flow.  I was down there when I could barely breathe.  Is he having trouble breathing?  Is he going to be okay?  What got so bad he had to go down there?    Does this kind of thing happen with my kind of leukemia?  As I shared what I knew about the situation, I could see the tears welling up in her eyes.  Paige has such a heart for the 'cute little bald kids,' as she calls them.  She says she can say that because she is one.  We are used to seeing kiddos on our floor--especially the little ones--smiling and playing.  We are used to seeing them take rides in wagons with their IV poles.  We are even used to seeing them resting in their rooms--sick and tired of cancer and all that comes with it--during our strolls around the floor.  This marked the first time we were there when one of those kiddos was moved to Intensive Care.  It was tough on her as a fellow patient and tough on me as the mom of a child fighting cancer.  Our hearts were breaking for that family.

From that point, we have prayed and prayed and prayed some more for that precious little boy and his family.  He's still fighting, and we are still praying.  Paige makes it a point to include all of the other kiddos affected by childhood cancers--whether we know them by name or not.  She prays for healing for all of them so they don't have to "keep going through what kids should never have to go through."

Funny thing, though.  After we've prayed--including giving thanks for the healing God has done in her and that to come--Paige has this sense of peace that takes away the worry about what might be.  What could happen.  That's when her faith takes the reins once again.  Faith, peace, and the calm assurance that though times get tough, God is bigger and tougher and will not leave her side.  Ever.  Now that's a reason to be emotional!