The doctor turned his head back to the computer screen on the desk and read out the official words from the final radiology report: “The MRI shows no evidence of new or progressive tumor.”
Let it sink in… Good news. The very best we could have hoped for! These little growths, these that have so threatened for months now, these have showed themselves to almost surely be treatment effects. What a strange cancer world we live in that where success is measured in not dying today and side effects can provoke a sigh of relief. Oh, but what relief…
In pre-op preparing for the scan: when the medicine works, it works quickly…one minute, up and playing, the next like this…
And Chase? He’s so funny… his hardest part was done yesterday when he woke up in post-op. The needle was removed and he could eat and that was it. And today, when we told him the news, he put his hands in his pockets, shrugged, and said “Oh. Good.” …as if he’d known all along. This boy, he takes it as it comes. And so will we. Oh, and tonight, it comes good and great with no fresh cancer news, answered prayer, and an MRI that can wait for three whole months instead of six weeks.
Good news… The very best we could have hoped for…
Moment by moment.
“This is the Lord‘s doing;it is marvelous in our eyes. This is the day that the Lord has made;let us rejoice and be glad in it.” Psalm 118:23-24
The sun is only hinting pink when I feel another presence on the edge of the living room. This is what he does, my early-rising boy… He wakes before it’s light, tip-toes out to wherever a parent can be found, and stands quietly, thumb in mouth, waiting for someone to see him and call him into the light.
Still rumpled and rosy from sleep, mismatched in his Lightning McQueen bottoms and a shirt that announces “I fightcancer. What’s yoursuperpower?”, he jumps onto the couch and snuggles close. His talk turns to the subject that has been plaguing him for about a week now: the upcoming MRI.
The questions come as they do every day; several times a day: …When is my MRI? Will there be ‘beeping’? Will I have a needle? Can I eat? Who will go with me? Will you come back to me?… They come with heartbreaking regularity and the answers are always the same. In a life that’s anything but predictable, he can at least rely on the same answers to these small questions that are so very big to him.
In a day, he’ll wait in pre-op for almost two hours after having gone nearly half a day without food or drink. They’ll lull him and then hold a mask over his face while he lays on the threshold of the machine with no parents in sight to say “It’s okay, sweet boy.” And while he sleeps, they’ll put a needle in his arm to keep him hydrated and inject dyes and he’ll be in the machine for nearly two hours – the only blessing: he’ll be mercifully unconscious.
You hear from me on this subject early and often, and in the last part of the last year, it was often-er than not. My words hardly change…we can’t, we must, we wonder, we shouldn’t, God is good. Always.
So today, hear Chase. He’s about 24 hours away from a big MRI and he’s scared. He also wasn’t sold on the idea of a video until I promised him that he could hold his father’s tape measure. This is what the early morning and late nights look like…the twisting mouth, the working to remember words, the thinking about mosquito bite scars on top of his skin rather than the potential of cancer growing under it. He’s part boy, part wise far beyond his years, part broken by his treatment and tumor…and he’s all Chase.
Moment by moment.
*Note: His last words are “I want Mrs. Schneider to pray for me.” That is the name of a dear friend who -because Bob needs to work tomorrow- will be accompanying us to the hospital so that I don’t have to be alone on MRI day. Chase knows that while we can’t be with him, Janet and I will be praying for him in the waiting room while he’s in the MRI.
The last time Chase was in Craig’s care, Chase had a fever of 104 and his blood pressure wouldn’t stabilize.
I rode in the cab of the Lurie transport with the driver while Craig and the rest of the team sat and cared for Chase in the back. Want a crazy experience? Buckle into a transport moving “sirens and lights” as fast as safely possible down the side of one of the city’s biggest roads at the height of rush hour traffic. It has the feel of racing time itself.
That day, the last moment we saw Craig was when he delivered Chase to his hospital room, and on hearing of another child who needed to be “brought home”, he looked out at the October lake whipped in the wind and said “I wonder if they’ll let us fly…let’s go.”
Craig is one of the many incredible, every-day heroes of the hospital and we had the great pleasure of seeing him this last weekend at a Christmas concert. No transports, no medical supplies, no nothing of sickness… Just holiday smiles. And Chase remembered him! A blessed moment.
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
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
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.
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.
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.
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…
Lining the platform and cheering as the “North Pole Express” pulled in and towered over us with a whoosh and hiss.
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.
The train cars filling with musicians, clowns and puppies, Christmas helpers and games, snacks and laughter as we sped along.
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…?
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.
Looking down at my golden ticket and seeing the word “HOPE” star-punched special.
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!“
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.
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
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.
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.
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.
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.
Today, I walked into a huge medical facility bay and stared down a gigantic white truck structure. The MRI.
Today, I watched my loving husband carry my darling son up into the structure as he spoke calmly and quietly, and Chase, red-faced and teary, clung to him and cried that he couldn’t…just couldn’t…do this right now.
Today, I stood in the bay as only one parent could go inside with Chase, and my heart ripped just a tiny bit at the sound of his screams and then it was silent but for the pounding of the machine. And I would learn later that though he screamed in the room, the minute the scan started, he became peaceful and still and stayed still for the whole test.
Today, as I held my breath and prayed for Chase in the sound of the machine, a man came up and introduced himself – the husband of a beloved proton radiation nurse who had cared for Chase nearly two years prior – what a small, beautiful world it is some days.
Today, I watched Chun, the camera man (because yes, we have a camera crew here with us now – so much more on that some day soon) peer around the corner of the machine and flash me the “thumbs up” – Chase was okay and he was done. He did it!
Today, Chase descended out of the gigantic white structure, held his arms out to me and shouted “Mom! You came back to me! I did it and I was SO brave!!”
Today, we – Bob, Chase, the camera crew, a friend from the hospital, and me – we all waited in quiet anticipation to talk to the neurosurgeon.
Today, we all stood in the small exam room to hear that the growths, though changed and grown a little more, are considered stable.
Today, we talked of movies, and keeping up with small children and their energy as Chase went through the paces of touching his nose and myriad of other normal things that may not always come easily to him and Dr. Alden knows this and watches out for him.
Today, we heard that we get to wait to look again until January and enjoy our holidays and that we don’t need to think about biopsies or treatments right now.
Today, we heard that January is most certainly a necessity and that at least one of the growing places on the MRI is still a concern.
Today, we talked about nobody having all the answers and how frustrating it is when we ask and the doctors long to reassure with decades of concrete research and can’t.
Today, we were reminded that if we see any, absolutely any changes in Chase, we need to report them immediately.
Today, we chafed against the wait again and found our spirits wanting.
Today, we were given the day, and we’ll take it…
…moment by moment.
“We were made to run through fields of forever, singing songs to our Savior and King. So let us remember this life we’re living is just the beginning of this glorious unfolding. We will watch and see and we will be amazed if we just keep on believing the story is so far from over and hold on to every promise God has made to us… We’ll see the glorious unfolding.”
Steven Curtis Chapman
Waiting for the neurosurgeon and mildly questioning Dad’s ability to assemble a Transformer…
