He is good

Tomorrow marks 142 days since Alex was diagnosed with Anaplastic Large Cell Lymphoma.  Tomorrow marks the end of everything we’ve been holding our breath for over those past 141 days.  We sat in that room, overwhelmed with emotions I cannot put into words, listening as his oncologist explained that this is “very treatable” & “this would just be a 6 month detour” in the road.  “Soon” she said “we would be having final scans & getting back to life”.

And that’s tomorrow.  Final scan.

It was dark 141 days ago.  Although we trusted his oncologist, it only takes a quick WebMD search to see that “treatable” for oncologists and “treatable” for mamas are two very different percentages.  Knock-you-to-the-floor-fear loves to creep into the space between those two numbers.  And doubt is close beside it.  Darkness surrounds you.  It is heavy and cold and damp. It is a scary, awful place to sit, that space between percentages.  But with every passing round, improvement is made and you begin to believe & the gap of fear & doubt closes ever so slowly until it is just a crack.

Right now darkness has been overtaken by light.  Things are looking very good.  Every indication is that sweet ginger has fought hard & cancer has retreated.  Hallelujah!  God is so good.

hmmmmm…God is good.

But what if?  What if things aren’t so bright tomorrow?  What if scans come back with signs of disease?  What if sweet ginger still has cancer?  Then what?  Do we assume that God is not good?

I’ve wrestled with the goodness of God before in my life.  Perhaps we all have.  I’ve searched for how God can be a good God when my circumstances have screamed “this is not good”.  How can God be good when life is not?  When babies die and mamas die and teens get sick and tragedy strikes?  How is God good then?

“In the beginning…” it says, he created everything.  “And he saw that it was good.”  God was good and He created good things.  And everything was good.  Until it wasn’t.  And the only thing that changed, was us.  We disobeyed & the world has been in disrepair ever since.  And all these generation later, we are dealing with the consequences of those that walked before us.  And these consequences make our circumstances really, really bad sometimes.  But God has never changed.  He is the same always.  He is still as good as the day he created good things.  He is still good.

The Bible has the phrase “he is good” nine times.  {for some light reading: 1 Chronicles 16:34 & 5:13, 2 Chronicles 7:3, Ezra 3:11, Psalm 106:1 & 107:1 & 118:1 & 118:29 & 136:1}  Each of these verses says something almost exactly the same – “he is good; for his mercy endures forever”.  He is good.  But it’s not that “he is good; for he healed my son of cancer” or “he is good; for he made me have lots of money” or “he is good; for he allowed that mama to give birth to a healthy baby”.  “He is good; for His mercy endures forever”.  His character drips with mercy and grace and faithfulness and love.  God’s character is nothing but good.  God’s goodness isn’t about my changing circumstances, but rather all about His unchangeable character.  He’s not good when good things happen & not good when bad things are happening.  He is always good.  Everyday, every moment, every circumstance.  His goodness never wavers.  He is good because in the end, when everything that we hold onto so dearly with our death grip in this life is gone, His mercy will still be there covering over our disobedience.  All the junk we do that we ought not {love the phrase ought not} do will be covered by His mercy.  All of it.  And that will be very, very good.  Forever.

Do I wish my circumstances to be good?  Absolutely! But if they are not and I am staring at the darkness, He is still good.

Four Apps You Need While Fighting Cancer

We’re just a few short days on the other side of treatment.  Counts are still dropping.  Scans are still pending.  But with treatment fresh on my brain, I wanted to sit for a minute to look back at all I’ve learned from a practical standpoint.  Apps on my smartphone were a must!  Technology used to make treatment more manageable.   If you ever find yourself on the cancer road, these are apps you’ll definitely want.

  1. Medication App called Round Health.  You can download it to your smart thing here.  At one point, sweet ginger was on several medications.  Not all were taken at the same time or in the same interval.  Plus, with two of us {me & dad} administering the various meds, it was hard to keep track of what he’d had, what he needed and when he took it last.  Round Health app was the easiest medication tracker that I tried.  I added all meds and their schedule.  When he took a dose we simply tapped the button recording the time & dose taken.  No matter who administered it, it was recorded for both of us to see.  Notifications could be set up to alert us when a dose was due.  This app proved itself over and over again and was very useful in talking with his doctors.
  2. Calorie Tracking App called My Plate.  You can download the Apple version here.  For the first few rounds of chemotherapy, sweet ginger’s weight was of major concern.  He had initially lost about 15 pounds in the weeks leading up to and immediately following diagnosis.  His doctors were concerned & after the debacled feeding tube incident, we were determined to make sure sweet ginger gained weight.  This app has oodles of barcode data, simply scan what’s eaten & it tracks the calories {and other nutrients} you’ve eaten.  Simple to use, easy to track.  Gladly, it helped sweet ginger gain all those 15 pounds back, plus!
  3. Caring Bridge.  You can find it here.  Family & friends want to keep up to date.  They want to know how things are going.  To celebrate the ups and help during the downs.  The very, very best way to keep everyone you know in the loop is with Caringbridge.  This site allows you to write quick journal updates that go to everyone you know who follows.  It completely {or nearly completely} eliminates your need to text, email and call everyone you know with information.  Everyone gets your updates at the same time.
  4. Bite Squad.  Hospital food can be alright.  But after several days, weeks, months…maybe not exactly what you’re craving.  Enter Bite Squad.  Another app you can find here.  Depending on where you live {or where your treatment is} this service is a must!  Food from hundreds of restaurants delivered right to where ever you are.  Feel like pasta? great!  Feel like Mexican? no problem.  Need your favorite burger?  it’ll be at your door in a flash.  Delivery charges range from $1-$10.  We used it every chemo round at least once, sometimes every night.  **if you’re looking for a gift card to get someone in treatment, this would be the BEST gift card I could imagine receiving**

BONUS… the non-app tip that will make life with treatment SO much better.

  1. Glad Press & Seal Wrap.  Who knew this would be such a valuable thing??  At every appointment, the port is accessed.  Sweet ginger has a power port that requires about a 2 inch needle to be inserted into the port on his chest at every appointment, for every treatment.  In order to minimize pain, we use Emla numbing cream.  But what a mess that can be?  to keep the Emla on the port & not on his shirt, we cover it with Press & Seal wrap.  It is the perfect cover.  Sticks to the skin just enough without absorbing the Emla.

Un-Understandable

I’m working on a little project.  A little something-something.  I’ll post the finished work in a few days {fingers crossed} but for now you can have this sneak peek::

If counts look good tomorrow, Round #6 will begin in just 2 days.  The last round.  The final chemo.  The End.

It’s tradition on Floor 7, especially with the older cancer kids, to decorate doors to celebrate the end of treatment.  And I’ve been keeping myself busy this week with just that.  The young fellow at the CVS counter {I’m officially old when I call the kid at CVS a “young fellow”} laughed as he handed me the poster with our favorite hashtag #WeedsAreTough.  He found it a bit more amusing than most.  And the Cricut has seen a lot of action cutting out lime green ribbons and vinyl letters.  “LAST CHEMO”

As I pressed the black vinyl in place I couldn’t help but remember where this began.  I didn’t know then that I would ever get to make a “last chemo” poster.  Those early days were filled with so much unknown.  Anxiety.  Fear.  He was SO sick.  So sick so fast.  We didn’t know how this all would end…how it all would go.  I couldn’t know then if I would be making a “LAST CHEMO” poster or one for a memorial service.

I don’t know why God does what he does.  Or allows what He allows.  However that works.  I don’t understand His thoughts, His ideas, His vision or His plans.  Why my baby gets a “Last Chemo” celebration while another mom on Floor 7 gets the horrible news that the treatments aren’t working.  I cannot fathom.  It is un-understandable.

I am about as analytical a person as you can get.  Those silly Facebook quizzes usually peg me at 85% left brain, 15% right.  The left side are all those traits that made me an amazing accountant; analytical, rational, systematic, symbolic, objective, orderly.  The right is that artsy side…which clearly I lack.  Unless of course it can be contained in systematic patterns, usually a lot of symmetry & very precise layouts. Anyway, I would love for everything in life to fit neatly in a mathematical equation.  Solvable.  Understandable.  Predictable.  Believe me, I have tried with many life circumstances over the years.  Trying to control the uncontrollable.  I don’t handle un-understandable very well.

I could spin my wheels attempting to determine the formula God uses to heal.  I could try everything I can imagine to ensure a particular outcome.  But God, just doesn’t operate on the same line as my human thinking.  Bad stuff happens.  To so-called good people & so-called bad people.  To people who pray fervently & those who do not believe in a god at all.  To those who are building their own kingdoms and those who are doing amazing Kingdom work.  To those with deep faith who abide in Jesus & those with no faith who live contrary to every word of the Word.  Un-understandable.  And this side of eternity, I don’t think there will ever be adequate answers as to why.  Because we simply cannot understand the thoughts and ways of God.

For my thoughts are not your thoughts, neither are your ways my ways.

But as un-understandable as His ways are, He has revealed His character to us.  And while I cannot plant my faith on every situation turning out the way my thoughts think it should, I can always stand firm & rely heavily on the character of God.  Always.

  • He is always faithful {2 Thes.3:3}
  • He loves me always
  • He will provide strength {Isaiah 41:10}
  • He is watching me & cares enough about my hurt to collect my tears {Psalm 56:8}
  • He is mercy & comfort {2 Cor 1:3}
  • He listens to my prayers {Psalm 116:2}

So much of what happens in this life just can’t be understood, can’t be determined, analyzed & formulated.  I don’t know {& neither do you, lest you think you are God} why I’m decorating sweet ginger’s hospital room door for a last chemo celebration while another family grieves the loss of their child.  Un-understandable.  But I know that I know that I know, that He will not fail when the circumstance of life do.

Free Mercy

He has shown you, O mortal, what is good. And what does the Lord require of you? To act justly and to love mercy and to walk humbly with your God.  Micah 6:8


Sixteen weeks ago we were handed the news that sweet ginger would be fighting the cancer beast.  Fear, unknown, anger, anxiety…just a few of the emotions that pumped through my veins in the days following.  We set the course, we leaned on each other & our friends and we stood as firmly as we could on our faith.  And we prayed.

We look back now with a treasure trove of positives.  Sweet ginger has fought hard & treatment is working.  Cancer is dying {or completely dead!}  For that we are thankful to God.  But 16 weeks ago, I had no idea what all this would look like.  Darkness lingered.  And I know that sometimes even with the greatest of hope, there still comes hurt.  Even with fervent prayers, the answers are not the ones we are requesting.  Sometimes the joy in the morning is many, many mornings away.  And there are times when no amount of faith will change the final earthly story.

There have been songs played these past 16 weeks that I cannot sing…”if that’s what it takes to praise you, then Jesus bring the rain”.  I have been standing with dark, ominous clouds all around, closing in on me & my family.  And I have prayed {unapologetically} to please don’t send anymore rain.  It’s ridiculously easy to sing about your faith & almost request that Jesus send the rain when you’re standing on a sun-filled day with no clouds in view.  But when the rain is so close your bones ache, and when you’ve stood in the middle of flooding rain waters before in your life…it’s just too much to ask for.

Over the past 16 weeks I’ve gotten some stuff right.  But I’ve also gotten a whole lot of stuff wrong.  I’ve been thankful.  And I’ve been oh, so angry.  I’ve quietly praised & loudly complained.  I’ve wrestled, really wrestled with God-on the ground, all out WWF style.  And I’ve praised & celebrated with hands-raised hallelujahs.  And I’ve questioned & whined & even bargained a little.  Because that’s what we do.  Us humans.  If we were able to get this all right, we definitely wouldn’t need the Word.  Or a Savior, for that matter.  Everyone is going to mess up.  Over little things & enormous things.  We do our best & rely on the saving grace of Jesus to fill the gaps of our humanity.  The Bible is filled with stories of people getting this all wrong.  But it’s also filled with the unrelenting chasing of our God towards us, arms open,  handing out abundant & extravagant grace.

I’ve learned a million lessons in the last 4 months.  {most that I would rather have never learned}  And I’m sure you’re thrilled {sarcasm font} to read them all.  But the top lesson has to be the power of mercy.  Throw that stuff around like you’ll never ever run out.  Hand it to every.single.person you ever come in contact with.  Especially those facing hardships that you cannot fathom, understand, imagine.  I have not always been so good at this.  Get off your high horse of judgment, of knowing exactly what is best, of thinking you understand how God uses another person’s story {a.k.a. pride} & get in the business of throwing around mercy.  Mercy says “God is bigger than any mistake you might be making”.  Mercy turns judgment on its head and destroys it.  Mercy eliminates shame.  Someone might not be where you are, or where you think they should be, or doing what you would do, or doing what you think they should be, but it might be exactly where God wants them, as He’s teaching them powerful lessons they need to learn.  There are people going through tremendous things, horrible situations, impossible moments.  They may be sitting in the dark.  Alone.  Give them compassion, grace, softheartedness, kindness.  Give them abundant mercy.  Because they likely won’t find the grace-filled arms of God through critique and judgment about how they’re sitting wrong in the dark, but will see Him clearly through the outpouring of abundant, undeserved, extravagant mercy.

new morning

We sat at clinic yesterday to get post-chemo counts for the sweet ginger boy.  He said he was feeling pretty good & at this point in the process he’s usually spot on.  But the night before he’d been playing with an ever-so-slight fever of 100.1ºF.  I, of course, was a mess.  Fever is one of the few things that they stress over and over and over again as being important to watch.  So I did what any rational cancer mom would do, I set my alarm for every few hours to get up to check on sweet ginger boy.  He was thrilled {sarcasm font}.

His fever never spiked & actually by morning was back to normal.  Clinic revealed that his counts are awesome.  Everything seems to be progressing exactly as it’s supposed to.  What we have been praying for.

and yet…

Anxiety can creep into the strangest moments.  Waiting in the waiting room at the pediatric oncology clinic yesterday was a new patient.  About sweet ginger’s age.  Full head of hair, meaning she was just starting the process.  Her mom stood at the counter, trying to hold back tears while listening to the instructions for filling out all the necessary new patient paperwork.  In a flash I remembered all of it.  The fear.  The unknown.  The anxiety.  The absolute panic about schedules & routines & “normal” life being uprooted for this, this cancer.  And as we waited to go back to the cabana {yes, they call the rooms cabanas} I began to process how all that unknown had now become known &routine.  And I got…MAD.

Mad at cancer.  Mad at all the havoc it wreaks.  Every where it goes it brings chaos, fear, anxiety and tears.  Mad that it attacks children & babies.  Mad that it hits without reason.  Mad that it isn’t always “treatable”.  Mad that just as we’re thankfully finishing, others are just beginning on the cancer road.  Mad at all cancer represents.  Cancer just plain sucks!

But to sit too long in the swamp of my personal pity party is not good for anyone.  True.Story.  So this morning as the sun rises on the horizon, over the line of trees in our back acres, I remember that it’s a new day.  And while cancer is still here this morning, my Strength is too.  

 

#Perfect

May I be honest?  The past few weeks have been a bit rough.  Cancer is dying {can I get a hands-raised hallelujah?!} but the chemo rounds are getting tougher on sweet ginger’s body.  More side effects like nausea, fatigue & chemo brain are creeping in. He’s a bit more, let’s say ornery, for good reason. And my patience often feels fleeting.  Cancer, chemo, all of it is just plain no fun!

Now how about we throw Christmas in the mix?  Why not?  I will admit up-front that online shopping has saved the gift giving aspect of the holiday.  I have not stepped foot in an actual brick & mortar since Black Friday.  This has no doubt helped to save my sanity.  And while the boxes are filing up nearly all my adequate hiding spaces, I would say that shopping has come to a close.  That’s the good news.  Cancer cannot win the gift giving battle!

I think what has been getting to me…is all the “perfect” Christmases I see everyone else having out there.  And by everyone, I mean a bunch of people who mostly I don’t even know.  Don’t.  Even.  Know.  And by perfect Christmases I mean the ridiculously faux, staged, photoshop perfected, do-people-even-live-in-your-home posts filling my Instagram & Facebook feeds.  I don’t know most of the folks & I know that there’s no way their homes looks like that 100% of the time.  Yet for some reason my Christmas feels downtrodden and frankly lacking when their homes, cookies, decor, Christmas lights, trees, parties with every ounce of their perfection fill my screen.  Here’s the amazing tree at the nurse’s station on the oncology floor:

The “perfect” tree for the cancer kids of the 7th floor.

For many, who are in far worse circumstances than ours, this is the only Christmas tree that they will be enjoying this season.  It hardly compares to the ones coming across the wi-fi.  And I have spent too much of my recent days a bit on the angry side about that.

OK!  I’ll say it so you don’t have to.  Jealous much?  Yes, I would agree.  There is a jealous covetousness that sits inside of this little annoyance of mine.  Jealous.  Covetous.  Ugly.  Really…I’ll say it..:: I really just want a perfect Christmas, not a cancer Christmas.

A “Perfect” Christmas

What exactly is a perfect Christmas?  From my feeds, I might conclude it’s in the tree, the decor, the food, the parties.  So what to do about that?  I could cancel my Instagram & Facebook accounts.  But I don’t actually think that would solve the root of my problem.  Instead it would perhaps just mask it for a while.  I would say the best go-to is always…wait for it…prayer & the Word.  So, that’s what I’ve been up to.  And here’s how the story looks this morning.

Yesterday, while feeding the chickens in temperatures that make your face hurt, I was complaining {pretend you’re shocked} about all the frozen poop in the coop {that’s a fun rhyme} it occurred to me that Jesus was born in a stable…basically a big chicken coop.  The poop in that stable was likely not frozen and instead horribly stinky.  And that is where Mary delivered him.  Mary.  What on earth would have gone through her mind if they’d had Instagram back at Jesus’ birth?  All her other friends would be posting full make-up smiles holding precious pink newborns wrapped in striped blankets from clean beds with hashtags like #perfectbundle and #amazingdelivery, while she was holding her precious bundle in some old strips of cloth Joseph found on the ground of the stable and shook off.  There would have been dirty animals, straw & stinky poop in the background of her photo with Jesus.  Not exactly hashtag worthy?

But as I envisioned this, about the King being born in a dirty old barn, I couldn’t help but smile.  Jesus really isn’t interested in our “perfect” Christmases.  His Christmas {if you can call it that} was less than picture perfect.  He isn’t necessarily impressed with our picture worthy Christmas decor or our Christmas cookies or parties or any of the things we pretend are perfect & post for some “likes” and accolades on social media.  All those things I’ve been jealous of lately.  Jesus came for people.  Christmas is about people.  Christmas {coupled together with Easter} is the gospel…the whole story…the perfect story.  Christmas is about Jesus.  Coming to earth so humbly it’s ridiculous. Remembering this, made my jealous rage {yep rage} seem so misplaced.  And rather silly, really.

Mary’s Instagram would have looked absurd.  Imagine it.  Baby Jesus in a feeding trough-#cozy.  Holding baby Jesus while the cows lick his face-#madcowsnotspreadthroughsalivaright.  Selfie with Mary, Joseph & baby Jesus in the barn-#atleastitscovered.  Jesus surrounded by dirty, stinky shepherds leaning in, touching baby Jesus’ face-#strangementouchingmybaby. Mary holding Jesus while wise men bow with amazing gifts-#theybroughtembalmingfliud.  These pictures would have been so foolish by our current Christmas standards but each embodies the Perfect Christmas. And each should have #perfect.

I don’t post this to judge anyone.  Please don’t take it that way.  I think these pictures of trees and decor and parties are beautiful. I just needed to realign my heart, remember what Christmas is really about, and appreciate my cancer Christmas.  When I look at Mary, I can see that this Christmas perhaps is closer to the Christmas Mary experienced…dirty, ugly, less-than-ideal.  But because of Jesus–absolutely perfect.  If your Christmas is not exactly Instagram-worthy, remember neither was Mary’s.  But she treasured up every, single moment.

Luke 2:19 – But Mary treasured up all these things, pondering them in her heart.

Count Your Many Blessings

In these early hours while the house is still quiet and before the bird gets ready for his big debut, I thought it might be a good idea to reflect for just a moment on this year & the abundance that I have to be thankful for.  Especially looking back over the last two months since sweet ginger was diagnosed, it’s easy to look to all the struggle, pain, unknown and inconvenience and pitch a tent in the land of the whining complainer.  I don’t want to spend time there {I don’t usually like the people that live in that place}.  I want to march on through & spend time in a land where blessing are counted.

I am thankful for the obvious things – friends and family.  But this year I am specifically thankful for those who have come alongside us, who have cared for, prayed for, thought of & loved us.  I am extra blessed by those people who have been able to let me remain “normal”…let me just be me.  I am thankful for people near and far.  I am blessed by so many, many people and their love.

I am thankful for oncology researchers, doctors and nurses.  I had no idea how much love poured from within the walls of the sterile hospital.  These men and women have literally held us up these last two months.  To those who pour their hearts and lives into childhood cancer, there are few words that express my gratitude.  You are a blessing to me!

I am thankful for sweet ginger hair’s friends.  In rough and tumble days, the kids that love my kid are truly a blessing beyond words.  They come hang out, they bring food, they organize t-shirt & bracelet sales, they send cards, they shave their heads & bring a bald boy hats…they are the most amazing group of kids ever.  And I am thankful for the friends of my other two kiddos too.  They provide relief, normalcy, a place to hang out and be a kid.  I am thankful for the friends of my kids {and their parents} more than I ever thought I could be.

People top my list of this year of blessings.  I could live my entire life without a new car, without a bigger chicken coop, without a Fixer Upper-worthy home. But I cannot live without the love and kindness of the people I share this life with. The things that fill my heart are things that just cannot be bought.

Have a wonderful Thanksgiving.

 Shout with joy to the Lord, all the earth!
    Worship the Lord with gladness.
    Come before him, singing with joy.
 Acknowledge that the Lord is God!
    He made us, and we are his.
    We are his people, the sheep of his pasture.
 Enter his gates with thanksgiving;
    go into his courts with praise.
    Give thanks to him and praise his name.
 For the Lord is good.
    His unfailing love continues forever,
    and his faithfulness continues to each generation.  -Psalm 100

 

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.