From Where I Sit

It’s been a bit ugly in the world lately.  If you haven’t noticed, you likely do a much better job of staying off of social media & news outlets than I do.  There’s an arrogance.  A bitterness.  A whole awful lot of finger-pointing & judging. There’s outright rage & anger & hatred.  Real hatred.  Words that should never be said have been screamed.  Thoughts that should never be thought have been thought.   And actions that should never occur have boiled into our everyday.  It seems that ugliness might just be winning.

Please, though, don’t lose heart.

…because from where I sit…

I see goodness & kindness.  I see no separation of people based on color or gender or religion or any of the other zillions of categories we throw people into.  There’s no hatred, no judgment, no bias, no rage.  From where I sit, in a sterile room on the childhood cancer floor at Children’s Hospital, I find only goodness & kindness & understanding & love.

Each room on that floor holds a child.  A child fighting for their life.  And there’s not a single person walking those halls that thinks one of those children deserves to win their battle more than another.  When everything is stripped away and all you’re left with is a fight to save your baby {even your 16 year old baby} every single one of us is on equal footing. There is no rich or poor.  Or black or white.  Hispanic or Somali.  Muslim or Jew.   We may have once believed that some were more important, more worthy, more valuable than others, but in the face of cancer, none of that exists.  We are all the same.

We wander the halls sleepily in the night & early morning.  {mostly tracking down coffee}  We gather without planning in the parent’s lounge waiting to brew our cup of morning joe, wiping sleep from our eyes and often tears from our cheeks.  We smile & offer kind words of encouragement to each other.  We know each other, even though we don’t.  And the very last thing we care about in that place is color, religion, gender, nationality or political views.  In that place we are humans with the exact same purpose – love our families and bring our babies home healthy.

It’s easy to get caught up in the ugly that is in our world. It’s easy to see only the bad and forget all the good.  But I offer you that we are all more alike than we are different.  And to cut it down to the very center, the exact core, us humans are pretty much the same.  We want to raise amazingly wonderful & healthy kids, to love them well and do our part to make sure they love others too.  And from where I sit, this is the goodness I see.

7th Floor. Where all childhood cancer patients go.
7th Floor. Where all childhood cancer patients go.

The Good News

Nearly two months ago I couldn’t imagine the good news.  I heard the word “cancer”, I saw the toll  cancer was taking on my sweet ginger boy.  Good news seemed too far away to grasp.  Too far away to fathom.  Way too far away to even think of for a moment.  But.  {but is sometimes a wonderful word}  But.  Here I sit.  Fifty six days after I first heard “he has lymphoma” & I find myself twirling around good news.  “No sign of lymphoma in his bone marrow.”  Absolutely the most amazing eight words I have ever heard to this point.  Celebration worthy!

I’m learning so very many things through this.  I have about a half a trillion posts about what cancer has taught me {aren’t you excited for those to come? wink}.  But most importantly right now, I’m learning to celebrate whatever is celebration-worthy at the exact moment that the celebration is due.  I have no time to think past the celebration.  Today is a very good day.  Cancer is dying inside my boy.  That is good.  Very good.  Tomorrow might not be as good & I may not celebrate tomorrow.  But today. I must choose to celebrate without hesitation.  Right now.  When the celebration is due.

I’ll be honest.  This is hard.  I have seen within myself a, maybe a, superstitious side that I didn’t know existed.  What if I post a positive post and celebrate a truly celebratory occasion only to have to post sadness or disappointment tomorrow?  Could one lead to the other?   Could celebration lead to disappointment on the next day?  See,  silly.  But I cannot be alone & I’ve read enough Caring Bridge journal posts from fellow mamas of cancer kids to know this isn’t exclusively my thought alone.

Did I do this in our pre-cancer world?  I think so.  I think I’ve always looked ahead. Always a step ahead, looking around the corner.  Running down each path in the fork in the road very quickly to determine which way is best to go.  And all the while passing right over the moments of celebration.  Worried the celebration might be for naught later or not wanting to celebrate until the celebration was final.  The big one.  The finale!

Well, the finale.  I don’t know what words I hope to hear one day.  Maybe it’s “remission”.  Maybe it’s “cancer free”.  Maybe it’s “we got it all!”  Those are really big words with a really big celebration attached.  But in the quest for the finale, I don’t want to pass over the celebrations on the way.  God has sprinkled this story with good news throughout.  Celebrations.  Like balloons all along this journey, I have to take the time to recognize each one and collect for a bouquet at the conclusion.  I must see each one & give Him thanks.  I must not hold out until the finale to praise Him & give Him glory for all that’s happening.

So.  We celebrate.  The tiniest of things.  In the moment.  Not considering what tomorrow will look like or if the finale will ever arrive.  We celebrate.

Flying with balloons
Flying with balloons

It’s a BIG fight!

Sometimes I forget just exactly how BIG cancer is.  That sounds ridiculous even to type.  Perhaps it’s a wanting to forget.  Perhaps it’s an “everyone else is moving on”.  Perhaps it’s just denial wrapped in a little wishful thinking.  For a moment – just a moment – when he’s feeling good, when his sarcasm is at peak performance, when he’s laughing & gaming & being a regular 16-year old boy, it’s easy to forget just exactly how serious the fight is that he’s waging.  For a blink, all seems “normal”.

But then chemo.  About now, about a week since the first drug was pumped into his system for this latest round, I’m jolted back to the reality that my sweet ginger boy is fighting a battle for his very life.  His blood factories are shutting down & with those his blood cells are on the rapid decline.  White blood cells that fight infection will soon be dipped to dangerously low levels.  Hemoglobin will drop to levels that will make him beyond exhausted with headaches.  And platelets will disappear making blood clotting nearly impossible.  Everyday things that we never even think of {the common cold, a nose bleed, a small cut, an unvaccinated acquaintance} suddenly become big ticket items.  And co-mingle that with mouth & throat sores that make eating difficult…battle!  As the cancer dies, risks abound.  Killing cancer is ridiculously difficult!! Ridiculous!  This is not a battle for the weak or those that throw in the towel with ease.  Luckily, Alex is stubborn {perhaps my “strong-willed child”}.  He’s doing a great job…but it’s really, really tough!

He told me as we drove home from Children’s on Tuesday night that the key to all of this is “attitude, laughter and sarcasm”.  I agree.  {But would tack on that some amazing oncologist who know what they’re doing doesn’t hurt either!}  \

I took some pictures of this most recent round of chemo.  He was feeling much better than in round 1 and didn’t mind the camera {as much}.  Cancer from the inside.  From the mama’s perspective.  Thanks for continued prayers.

Printable Scripture Cards to Ease Anxiety • FREE

Tomorrow begins Round #2 of chemo for sweet ginger boy.  His body bounced back quite nicely after Round #1 & his reservation is made on the oncology floor for the next round.  Seems weird to say we’re excited, but I suppose we are.  Excited to get on with it…

The past few days I have really been working on not getting caught up in the what-ifs.  So very much can go wrong & I could absolutely drive myself into an anxious bundle of useless mess if I spend time living in that place of worry.  And what good am I if I’m all balled up in an anxious bundle?  It’s not good for me.  And it’s definitely not of help to ginger boy who needs an extra helping of strength surrounding him.

In an effort to calm my anxious heart {and quiet my loud, whirling brain} I took to the Word.  I selected 8 verses that I knew could provide me with some respite from my worry, if I would just put them in front of me instead of the what ifs.  I wrote them down, then made them cute.

fullsizerender-83

I thought I’d share them with you.  A FREE printable!!  Click on the picture below or here.  Print them on your favorite card stock {I used Kraft 65lb}, cut them using the cutting guides & if you want to get real fancy, round those corners with a corner punch.  Then put them up where ever you’ll see them.  I have them in the office, kitchen, taped to the bathroom mirror and one in my car.  Before you know it the words on those cards will be words in your heart to be pulled up any time the anxiety pit tries to drag you under.  Enjoy them & may they provide hope to face what’s ahead without worrying.fullsizerender-84

The Lump In My Throat

Perhaps I’ve teared up a few times at the bus stop over the years as I’ve sent the 3 little Weeds back to school, but really I’m more of a “make way for a cartwheel ’cause they’re going back to school” kind of a mom.  September rolls around & I’ve had just about all I can muster of the free-flow, carelessness of summer & I cannot wait for some routine to return to my life.  Back to school brings with it organization.  Regularly scheduled activities on a calendar.  Oh, how I love a calendar with a plan.  That’s something to get excited about…that and the hours upon hours of time to myself with no one bickering, eating through the pantry in a single sitting, using all the broadband speed, leaving messes of dishes & wrappers all over the house or generally bugging me.  But really, it’s more about routine smirk  Back to school is when we all get to take a deep, long breath and smile at the schedule.

Yesterday though.  September 9 was the last time sweet ginger boy had gone to school.  Five weeks of home & hospital.  Five weeks of tests & chemo & general awfulness.  Five weeks of “absent”.  Yesterday though.

Feeling good with his immune system doing a great job of rebuilding to help keep him safe from the invasion of infections, I dropped him off at the front doors to DHS.  And he walked away from the car for the first time in five weeks without me.  Without me.  It felt like kindergarten all over again.  Except he wasn’t looking back at me for reassurance or a boost of “you-can-do-this-I-love-you” confidence.  And, shockingly, he not once asked if I could come with him, hold his hand, find his class or help him with his locker.  Not once!  So instead I sat and watched him confidently walk away.

back to school

That lump, the one that appears when you let go, settled in.  My mind wandered to all the awful possibilities of what could happen on this day at DHS.  Would someone touch him who has a cold?  Would a friend hug him who isn’t up-to-date on their vaccinations?  Would someone accidentally hit his port?  What if he started bleeding and his platelet count is still too low and he bleeds without stopping?  What if someone makes fun of his bald head?  What if? What if? What if?

When I am afraid, I put my trust in you.  – Psalm 56:3

What if’s are useless.  What if’s rob us of the good moments.  Rather than worrying, I decided to celebrate.  Celebrate that five weeks later, he’s feeling well enough to go to school.  Celebrate that on this day he had some “normalcy” in his life.  Celebrate that he has amazing friends who take excellent care of him and are rallying around him.  Celebrate that even when I don’t feel like I’ve got this, He does.  Oh, something could go wrong.  But if it does, then we’ll tackle it head on, just like we’re tackling this.  But it might not go wrong.  And why waste a real opportunity to celebrate on a what if that might never occur?

Hair

We knew it was coming.  It was one of the first side effect discussions.  Sweet ginger hair boy’s ginger hair would be going.  And yesterday was the day.

He had an appointment for labs at Children’s and as we drove into the city, he was yanking out chunks of his ginger locks.  He thought it was amusing.  Grabbing tufts of hair, giving a quick pull & having it all come out in his hand.  “It doesn’t hurt.  It just falls out!”  I asked him if he was ok, ok with his ginger hair falling out.  He said “yeah, it’s no big deal.  It’s just hair, mom.”

Later that evening, after we all gathered for dinner around the table together {a moment I now long for} we headed upstairs to do away with the straggly ginger locks.  Clippers in my hubby’s hand, hair fell to the bathroom floor.  Sweet ginger locks in piles on the tile around sweet ginger hair boy’s feet.  He smirked at the mohawk of long hair that remained.  Then he laughed as he glanced in the mirror at the long, wispy strands that remained in chunks and he chuckled as the final pieces were removed.  He ran his fingers over his newly buzzed head, smiled in the mirror & returned to his room to get some more gaming in.  “You ok?”  I asked again as I sat on the edge of his bed.  “Yes, mom.  It’s just hair.  I’m fine.”

“It’s just hair.”  True words.  And yet, it seems like more than just hair.  True I likely make way too much of his ginger locks – but seriously his hair color…to die for!  But it’s even more than just that.  And as I sat and looked at my boy, with his obnoxiously long ginger locks gone, my emotions all fell out from inside and rolled silently down my cheeks. Stupid Cancer!!  It steals so very, very much.  It slithers its way in & it begins its destructive ways as soon as it can.  It starts taking, taking, taking.

Oh, I know, it’s not really the cancer that’s taking…it’s the chemo.  Do not get me started on alternatives to chemo right now.  Feel free to fight your cancer battle {or your child’s} with whatever essential oil & beet juice concoction you think might do the trick, but we will be using the specific chemo treatment that our oncologists believe will be the best choice to actually defeat the cancer raging inside our boy.  So, yes, chemo is at fault, but if it weren’t for the Cancer, we wouldn’t need the chemo.  {stepping off my soapbox}

One day life is just chugging along.  The biggest thoughts, in reality, are not very big at all.  Worry centers around remodel projects and wardrobe decisions with a side of what’s for dinner.  And then bam!  Out of nowhere a battle.  All the sudden all that stuff is really little, stupid in fact.  Who cares what my kitchen remodel project looks like?  Who cares what my new shoes looks like?  Who cares what’s for dinner?  A real opponent is in the room.  And the opponent fights dirty.  It steals things that are important, things that make you “you”, things that you take for granted.  It requires drugs and blood and time and energy and emotions.  And it steals.  Steals so much…including hair.

Hair is really not the issue.  {although I do already long for when sweet ginger can grow his hair out as long as he wants and do that weird head flip that moves his way-too-long-bangs out of his eyes}  It’s everything that Cancer comes in and destroys.  In one big swoop, it reaches in and takes what it should not.  It causes upheaval and unrest.  And it’s everything that Cancer deposits too.  All the baggage it dumps.  It brings with it real worry and real fear. It removes, rearranges and wreaks havoc.

And yet…even with all it does, all it destroys…there is something bigger.  Something with more power and more beauty.  Someone who fights for me, for us.  Someone who takes great joy in us.  Somewhere I can rest.  A place to throw my anger, disappointment, anxiety & fear.

“The Lord your God is in your midst,
A victorious warrior.
He will exult over you with joy,
He will be quiet in His love,
He will rejoice over you with shouts of joy.”  -Zephaniah 3:17

#cancersucks

The New Normal

It’s been quite a while since I’ve been here.  I was taking a break for summer & then just when I was about to get started writing here again, the world got twisted and turned wrong-way-round.

Cancer.

Like a train barreling down the tracks at full speed slamming directly into my heart. The words of my 16 year old son’s oncologist {the fact that my son even has an oncologist} stopped my heart, my world, my everything.  And then in the same millisecond it all began to chaotically race in a tumbling out-of-control fashion; swirling and twisting around me, my mind failing to be able to hold together my very being.

Then came the information.  All the information.  Treatment.  Medications.  Side effects.  Blood counts.  Procedures.  I was suddenly being asked to drink from a fire hydrant flowing full force at my face.  “Take it all in!  Quickly!”

Blurry.  Messy.  Fear.  Tears.  Questions.  What-if’s.  Who knows?  All clamoring for my attention, my thoughts, my time, my now.  And in the very next millisecond, decisions are made, papers are signed, treatment begins.  Without time to process, think, ponder, decide.  Hit by a train, flooded with information – GO!

Cancer.

My sweet ginger haired boy was diagnosed with a rare form of lymphoma on September 21.  After several weeks of misdiagnosis and “he’s a tough case”, lymphoma was confirmed by lymphoid biopsy and bone marrow biopsy.  Stage 4 Anaplastic Large Cell Lymphoma – ALCL.

Port went in.  PET scan for baseline done.  Chemo began.

He’s finished one full round of chemo out of a total of six.  Five to go {those are some stellar math skills!}  Five days of chemo on a 22 day cycle.  But as I’ve quickly learned, NOTHING is schedule-able when it comes to Cancer.  Nothing.  Everything that I enjoy being so well thought out and printed neatly on a calendar weeks and weeks in advance is up for complete & total rearrangement at any moment thanks to Cancer.  Crazy, chaotic, unknown is where I currently reside {hopefully temporarily}.  Routine & schedule {two of my favorite friends} have had to sit down and be quiet.  At least for a while.

If you’re interested, we have a Caring Bridge site for Alex.  It’ll be the story of Alex and his cancer treatment.  Updates, hard stuff & {hopefully} plenty of celebratory posts!  Feel free to pop over there.

Here, however, is where I plan to tackle cancer from a mama’s heart.  It’s his cancer story, but it’s “my boy with cancer” story.  Feel free to follow along here.

He gives strength to the weary,
And to him who lacks might He increases power. – Isaiah 40:29