When Everything Changes

“Relying on God has to begin all over again every day as if nothing had yet been done.”

C. S. Lewis (Collected Letters)

It’s funny how a single day can change everything. 

I was sitting in the top of a football stadium along the river separating Ohio from Kentucky, the sun warming the still air all around us when I saw a new message on my phone. 

And everything changed.

For eight months now, the anchor in in the harbor has been a “wait” word. Wait and see if the cancer grows back. Wait and see if it grows into other new, breathing lung places. Wait to even look with an ultrasound because these kind of cancers grow so slow. And these doctors who see the worst and the harshest…? Well, can you blame them if they don’t want to over-cut thin skin, over-treat weary souls, over-anything these precious littles? I certainly can’t. 

But the scared places in my heart wanted to blame and scream to stop the wait and start the fight. The cancer is slow in other bodies, but cancers seem to like Chase’s body too much, and the last one grew fast like a wild fire in the wind. 

Four to six whole months to even peek inside… the pictures and news would come right before Christmas and his tenth birthday. Four to six unchecked months for the cancer to go and do anything, anywhere. And of course, it might not go anywhere. But this is Chase we’re talking about and he tends to have the outlier story; the road less traveled journey.

But then, a message read against the sun’s glare on my phone at the top of a football stadium changed everything just a bit. 

For, you see, sometimes doctors change their minds. They talk to each other and pour over the charts and histories and results like a holy grail of sorts, and then they turn to each other and question why they should stick to the idea of four to six months when Chase is a blink-of-the-eye kind of boy. And so, instead of waiting for cold weather and holidays, the message said we do it now, in just a few days at the peak of the pre-Fall warmth.

And yesterday, with a simple phone call, everything changed again

Because it’s not just the scan that comes in a few days, dear ones. Sometimes doctors change their minds about treatment too. They chart and think and test and then they turn to each other and question the wisdom of leaving cancer to grow in Chase’s body where it grows too well despite official prognoses and data. And so, while treatment may not be easy for Chase, it is a precaution that has gone from a distant possibility to an imminent reality.

For the first time since October of 2013, our sweet boy will officially go back into treatment. 

It’s silly and crazy, because we’ve known to expect this since we heard the words “It’s cancer” back in January. But it feels different now that it’s here, and it feels urgent in the speed of a changed decision. And I think at the end of the day, the best way to describe our hearts in this is ‘joyful grief’. We are so deeply thankful that the wait is over for now, and that the doctors looked to each other and came up with the answers that were heavy on our hearts. We did not have to fight them for these changes. They came to our conclusions on their own and that’s a blessing of the best kind when doctors have to be like family members on the regular. So there is joy in that oneness of mind, but there is grief too. Once again, we push into pain for the long term benefit and willingly subject our precious son to incredibly hard things for the sake of his future quality of life. 

We have been told that we will hopefully know more by the end of next week. And it could all change again in a second. But until that time when the results are known, through that time of tests and procedures, and beyond – whatever may come – as long as breath remains – we cry out for grace and strength in the …

…moment by moment.

[All pictures are from this past weekend; fulfilling Chase’s dream to finally see his friend Robbie Gould play in real time. All our love and thanks to the Gould family for making this dream a reality for Chase.]

Dear Cancer Sibling

When cancer hits, it never hits just one.

While it inhabits one body, it hits all.

This week, I watched my daughter play with her cancer sibling. She’s 11 and is exactly the beautiful, frustrating conundrum you’d expect of that age, but in the one moment she held Chase in her arms, anything juvenile melted instantly.

When she holds Chase, she knows nothing, but she knows everything. Into that moment of holding go years of pain, suffering, frustration, and love far beyond anything we would have imagined or desired for a pre-teen.

Watching the expression on her face – half-sister, half-mother – it caused me to recall that she’s one of many. …and the many are on my heart today. So, siblings, this is for you.


Dear Cancer Sibling,

I may not know you, but I want you to know that I see you.

I see the pain of wondering of a beloved playmate is going to die.

I see that pain in your heart while the other kids your age don’t hardly understand the words let alone the concept.

I see you standing in the doorway of your house…a friends house…a grandparents house…while we, your parents and protectors pull out of the driveway and go to another doctor, another hospital, another appointment without you.

I see you standing quietly in the halls of the hospitals while doctors and nurses buzz around and make a deal about seemingly everything and everyone but you.

I see you in the shadows of the flashing lights when the only words they’ll tell you are “it’s okay” and “stay out of the way”.

I see how hard you work on that skill, that task, that sport…all for that one event someone will take pictures of and send to your absent parents.

I see you hiding in your room, trying to drown out the screams of a small child getting a needle plunged into their chest.

I see your frustration when your broken, sick sibling that you love so dearly hurts you as if they don’t care.

I see the guilt when you have a moment of resentment or wishing it all could have been different. It’s okay… we all have those.

I see the playgrounds and school halls through your eyes as you protectively and with a righteous anger watch social situations go over your atypical siblings heads or behind their backs.

I see you crouch low over their bed and tell them it’s going to be okay because you’re there.

I see you talking to and playing with the air in front of you as you live out their memories and remember their presence.

I see you watch the same movie, listen to the same song, paint with the same color over and over again just because it’s a fixated comfort.

I see you being the one who doesn’t get the special gift or amazing experience.

I see you stand helplessly by and watch grown men and women sob scarily and uncontrollably.

I see you having a different, often less understood life from the other kids around you.

I see you marking birthdays and holidays with an empty chair at the table.

I see you visiting a cemetery while your friends visit a park.

But here’s what else I see…

I see your bravery.

I see your unconditional love.

I see you standing up when you’d rather fall down.

I see you stepping up when you’d rather sit down.

I see the hard things developing justice and mercy in equal, beautiful parts of your soul.

I see you living out the truth that no child should ever be left out; left behind.

I see you developing a sensitivity to others beyond that of your peers.

I see hints and teases of who you will someday become and it takes my breathe away.

You will hold the world and you will run it.

Today, you may feel like the one abandoned, but one day soon, you will be the one who includes, who leads, who fights, who dominates and you’ll be able to point back to these moments when it felt like nobody saw you and you’ll say: “This was when I grew.”

So quietly, bravely grow, my dear cancer siblings…

You are seen and we can’t wait to experience the incredible person you become.

Love,

Your Parents

Of Magic Trains, Candy Lands, And Those Who Bravely Run…

Every day, they run the gauntlet, the lights, the odds… They run into burning buildings, run to the bodies in pain, run to the hospitals.  These people who fight fires and treat sick… they are the brave and the heroes and the servants who lay it all out there so that we can be safe.  

And now, imagine if you can, all those heroes, in their uniforms with the bright yellow stripes and the heavy hats, in their shiny dress uniforms with the gleaming badges, in the dark blue covering bullet vests with holstered guns… Imagine them, lining the sides of a walkway, stretched as far as you can can see, down on one knee, clapping and cheering for… Chase.  …for the bald boy walking next to Chase.  …for the beautiful girl who’s cerebral palsy keeps her bound to a wheel chair.  …for these and so many more, the heroes knelt in salute.  Welcome to our Saturday…

Early in the Fall and life at our new little house, I received a call from Chase’s hospital asking if he’d like to participate in this special Christmas celebration: Operation North Pole.  Chase loves The Polar Express.  Another dream wish… I might have cried.  …yet another experience I wish you all could have had with us!

Being ushered in to parking by firemen in uniform and walking forward to parked police cars, trucks, and ambulances – all available for the children to enjoy.

The police officer who’s voice spoke love as he explained that he volunteered this year because his nephew, struggling with a life-threatening illness, had been a recipient last year.

Bill and Laura, our breakfast table helpers
Bill and Laura, our breakfast table helpers

Watching the strong, brave firemen humbly circle breakfast tables and wait on families with gentle deference.

Having Ronald McDonald circle past and ask Chase (into a mic) what he wanted for Christmas and hearing: “A dog”.  A what?!

Fireman Bill and Chase
Fireman Bill and Chase

Having a volunteer announce that there was a little boy with them today that had just turned five and watching Bill, the well-over-six-foot fireman hoist Chase high onto his shoulders while the room cheered in a celebration of life.

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The line of 8 shiny, new school buses to take us to the train station.

The sight of firemen helping secure wheelchairs into buses and make sure all were comfortable and safe.

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Pulling out of the convention center in a caravan of buses and seeing police cars and fire trucks alongside, in front, and behind us…like a presidential motorcade.

Turning the corner and out the bus window, seeing police cars blocking all traffic in the intersection and waiving to us on the bus – like we were ever so important.

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Fighting tears to experience going through red lights with a police escort at a time we weren’t beating time itself to the hospital.

Pulling into the train station to cheering crowds and ever so many more fire trucks and emergency vehicles.

Watching for the train...
Watching for the train…

Lining the platform and cheering as the “North Pole Express” pulled in and towered over us with a whoosh and hiss.

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Trying to see it all through my Karsten’s eyes – eyes that have never been on a train before because most of his short three years have been his older brother’s treatment.

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The train cars filling with musicians, clowns and puppies, Christmas helpers and games, snacks and laughter as we sped along.

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The compassionate eyes of the police officer as he knelt in his uniform, crouched by the bench where my three year old sat, listening as if he had all the time in the world and then placed smile-face stickers into Karsten’s chubby, sticky hands.

Uttering the only thing crazier than “We don’t wrestle in front of Ryan Seacrest!” when I had to say the words: “Son! We never, ever, ever tackle police officers!  Ever!”  …and seeing the kind and compassionate pat on the head of the smiling servant who understood small boys and their energy.

Because reindeer noses are for...?
Because reindeer noses are for…?

Hearing that the conductor was coming and watching a Hanks-esque man with pocket watch and lantern pull golden tickets from his pocket and punch stars into messages in front of tiny wide eyes.

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Looking down at my golden ticket and seeing the word “HOPE” star-punched special.

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Reaching the farthest point and watching more firemen and children board the train with bags of goodies and snacks for all.

Slowing at every station and town on the way back down the line and seeing people lining the platform and cheering for us as the engineer blew “Jingle Bells” on the engine horn and the children’s signs said: “North Pole – this way!”

Seeing that the children weren’t alone as they cheered in the stations and at every station and crossing, firemen and fire trucks lined up, holding signs and cheering.  And how I wish that I could share with you the picture of a ladder truck with 6 firemen standing uniformed atop it, waving to the children in the train windows and holding signs that said: “You’re going to the North Pole!

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Pulling back into the station and re-meeting our shiny buses and brave escorts for the ride back and pulling near to the building to see a Santa Clause waving the buses in and hear the gasps of children on the bus as they spied the red suit.

Going up the long escalator into the gauntlet line of cheering heroes on their knees for my brave baby boy and his brave siblings.  Seeing the kindness in their eyes as they “high five’d” and clapped and called them all by name.

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Walking through a sea of ice-blue tee shirted volunteers who cheered us on as we walked into the room they’d given time and endless effort to create.

Giving Olaf warm hugs
Giving Olaf warm hugs

Watching Chase throw his head back in joyful awe on the dance floor as an ice-costumed, real-life Elsa sang “Let It Go” and snow started falling from the ceiling.

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Walking all four children through a life-size candy land and hearing a fireman volunteer tell me that if there was anything I needed to let him know – and to make sure the kids got enough candy because there had been thousands and thousands of pounds donated for kids like my babies.

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The look on Karsten’s face as he turned from the dream of stuffing a bag full of every candy imaginable to see a miniature pony being led over to him.

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Darcy’s eyes widen when Kelly, the darling volunteer who stayed by our side all day, told her that there was a beauty salon for little girls in the “North Pole”.

The sight of all my children dancing and doing crazy things we only ever dream about or see in Christmas movies.

The arm of the fire chief on my shoulder as his voice softened and he said, “It’s our great pleasure to do this.

Having escorts from the building – carrying all our bags and seeing to our needs – and getting to the garage only to discover that the giving wasn’t over and they had more presents for all the kids.  An above and beyond kindness.

Saying goodbye to tall, brave Bill – the fireman who’d stayed by us since breakfast – as he put his hand on Chase’s head and wished him good health and we drove away so special and blessed.

And the heroes, they waved as we passed out of their sight.  Every day they run the gauntlet and the lights and the odds…and on this Saturday, as they’ve done four years prior and plan to do for decades still, they kneel to serve the ones like Chase and name them among their own with highest honor.

The strong humble and serve.

We are blessed.

Moment by moment.

This post is dedicated to all the public servants and volunteers who worked so hard to make Operation North Pole a breath-taking reality for those like Chase.  Your bravery is evident every day and your beautiful servant hearts for our families will never be forgotten.  Thank you.

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