The outcome could have been so much worse and for that, we praise. However, it was a shadow day, a “cancer” day, a reminder that we live in and with something that can threaten whenever it wants. It was a day for remembered dependence on God in ways that summer pool days don’t always impress upon me.
At the end of it all, we were all six under the same roof with no hospitals or sirens and we slept – truly slept – and for that I’m thankful.
At this moment in time, here’s all I know for sure: there’s a mercy that’s new every morning and a proven refuge in times of trouble.
Yesterday was a day when it was easier for me to throw up words onto social media sites, but I’ve copied them here today. May they encourage you to wait on Him, trust in Him, and see your wait as a beautiful part of the journey.
Moment by moment.
Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.” Psalm 91:1-2 (NLT)
10:15 AM —
In the first hour of this morning’s summer camp, I got a call from a friend at church indicating that Chase had been brought in complaining of a headache, right eye pain, and lack of feeling in his right leg – even some “dragging” of the leg.
[cue the parent panic…especially as his tumor presented on his left side]
By the time I got to him, he could walk, he’d never stopped talking, and he showed no signs of seizing, but he was so tired that he spoke hardly at all (for those who know Chase, you know this is out of the ordinary) and slept for a few hours following my bringing him home.
He’s now more “himself”, but keeps resting and sleeping – saying his head hurts and his leg feels “rusty” even though it works.
In times like this, it feels impossible not to panic, but we are trying to live in grace in the moment.
Right now, for me (Chase’s mom), that looks like this: setting a timer for 30 minutes and only checking my email when the alarm sounds – to avoid frantically opening the mail app on my phone every 20 seconds in hopes of hearing from Chase’s doctors.
It could be a virus, it could be his growth hormones, it could be nothing, it could be something… I don’t know and part of me doesn’t want to share this, but I’m writing it out because I believe I’m not the only one who is having to actively pursue calm and joy in the middle of a day I didn’t expect.
Peace is not coming naturally like breathing, so, I am CHOOSING it.
Choosing peace.
Choosing hope.
Moment by moment.
7:30 PM —
You all are so awesome for walking this journey with us.
I just heard from Chase’s doctors… apparently it could be one of a few things (no easy road for our boy), but it was most likely either a seizure of some kind, or even more likely, some sort of migraine episode…because, apparently, kids like Chase start getting more/frequent/painful migraines.
Oh, the side effects of breathing…
Only time will tell what really happened today.
If this is once-and-done, it was probably a migraine, but we need to watch ever so closely and at the first sign of a repeat performance – call. Don’t pass GO, don’t collect $200… CALL.
So, the weird day is done… And the weird life continues.
I want to be free of the wait for “the next thing”, and yet I choose to believe the wait is as purposeful as every other moment.
Tomorrow is a new day with new mercies.
Taking it moment by moment.
Thank you for walking this with us!
Chase still has a headache, but perked up in order to help with his evening shot.
This picture pretty much sums it all up: yogurt, butter, milk… And a light-sensitive, temperature-dependent medication to be injected with needles – on which we have yet to be trained.
This is something I’ve been wondering about: how do parents put needles into their children’s tender skin? Will it be easier or worse than the precision of a central line? I don’t know if I have the strength for this, and I’ve done an awful lot.
The story contained in the picture of the fridge is so normal. …and yet it’s so NOT normal.
In the Fall of 2012, Chase wandered the halls of the oncology ward while I diligently followed, pushing his IV pole with loving care (and not a little trepidation). As we paced, we crossed paths with a father pushing his young son in a stroller (IV also in place) and as families often do, we stopped to talk.
The boy in the stroller was a little younger than Chase, but they stared at each other earnestly. And I do believe it was the first time Chase really saw another little boy who looked like him with the hairless head and the white skin and the tubes protruding from his body. A curious knitting together.
The dad and I exchanged stories cautiously for no one ever wants to pry into the pain, yet there’s almost always the desire to know you’re not alone in this decimation of the life you’d envisioned.
As we spoke, I came to know that their diagnosis was fresher…and I felt like an old pro. We’d been devastated since July. They’d only just started.
And the crazy thing was… statistically speaking in that Fall of 2012, Chase was supposed to die – his cancer defied his chemo, his body routinely on the verge of giving in. Chase was supposed to die…and Lucas, well, Lucas was supposed to live.
That day, I watched the shock and pain spring into the father’s face as the dawning realizing hit that we both had death sentences, but one of us seemed more likely to suffer that fate. And that look on his face in the Fall of 2012, the shock and horror and beyond was not unlike the look in his eyes when Bob and I hugged him close while we stood beside Lucas’ tiny coffin – not four years later. We’d barely celebrated remission. Nobody saw the huge lung growths coming.
There is simply no accounting. There are no good words for what it was like to see such a small coffin and the hands that pushed toys around the playroom next to my son – stilled forever in eternal sleep.
And his parents and brother still breath.
There are no words.
But I write this out today to honor Lucas and for the sake of his parents and brother too. Sometimes, there is absolutely nothing good to be said to those asked to walk this horror, but we can remember. We can sit with them in their pain – inasmuch as we can ever understand that which we’ll never understand.
So, take the story of Lucas (how I wish you could have met him and known a little of his amazing life), hug your loved ones close, and reach out to those around you who are grieving…who must still draw breath when a part of their heart stops.
“Why should I be out of mind because I am out of sight? I am but waiting for you, for an interval, somewhere very near, just round the corner. All is well. Nothing is hurt; nothing is lost. One brief moment and all will be as it was before. How we shall laugh at the trouble of parting when we meet again.” Henry Scott-Holland
Looking forward to The Day...
Moment by moment.
Chase and Lucas in the oncology ward playroom, Spring 2013
“The faithful love of the Lord never ends! His mercies never cease.” Lamentations 3:22
“I can’t do this.”
His precious little mouth contorted on the one side – the way it always did when he became scared. “Mom, I’m not a first grader. I can’t do this. I need to go back to kindergarten.”
Behind his back, the window glowed with the last remnants of the sunset, signaling night…the night before school.
Chase shook his fuzzy, scarred head with each new sentence of voiced fear. After months of proudly proclaiming his being in first grade now and – including outrageous claims for privilege (“I should get to stay up late at night and watch Netflix because I’m a first-grader now, Mom.”) – the time had finally come and he felt himself unequal to the road in front of him.
His words flooded my heart as I heard echoes of my own timid voice in memory. Through his cancer, the ambulances, the hospitals, childbirth, even marriage… big things. Life things.
I can’t do this. God, I’m not ready for this.
I’m too young…
Too immature…
Too imperfect…
Too scared…
I need more time to prepare.
To get it right…
To be aware…
To make it count…
But here’s the thing with life… When I am blind-sided with my weakness and need, God is aware of the plan – my perfect life plan. And when things feel underdone and undone, out-of-nowhere, frenzied and stressed, He alone knows the ways to make them count for my good and His glory.
I knelt in front of Chase and put my hands lightly on his arms. Oh, how I wanted him to listen and connect with the words I needed to say. “Chase, you can and you will – because you are ready. It doesn’t feel like it yet, but you’re ready;” I paused, searching for the right words, “And, you are loved.”
You are loved.
In the hard moments when our brains acknowledge our good and His glory, but daily life throws gut punches that leave us lacking, gasping “I can’t do this”, it comes down to those very few words: I am loved; you are loved. These are the conduit from our head to our heart – from knowing what’s true to believing and resting in what’s good: His faithful love.
This had become a key sentence with my darling cancer survivor over the last several months. With his age and progression comes the increasing sense of “other”. He knows he looks different from those around him and often reacts differently too. He is strong, but it takes precious little for the remorse and regret to set in – and the fear too. I watch him feel unequal to the road in front of him and know beyond a shadow of a doubt that only perfect love can conquer this fear. And I know because I feel my own weakness, sadness and fear.
So, in the sunset before that August big day, as Chase lay his head down to sleep in that sixth year of a life we never thought he’d have, I grabbed the first piece of paper I could find (for it’s the words that are most important, not on what they are written) and I wrote what I believe…what I know and too often forget: You are loved. And then I tucked it, folded small into the blue top pocket of the crisp, new backpack to be found on the bus the next morning.
For truly, these words give a strength and joy like none other. And with these words, we are ready for anything life may bring – in His grace – moment by moment.
“See how very much our Father loves us, for he calls us his children, and that is what we are!” 1 John 3:1a
“Repeat them again and again to your children. Talk about them when you are at home and when you are on the road, when you are going to bed and when you are getting up. Tie them to your hands and wear them on your forehead as reminders.” Deuteronomy 6:7-8
Thank you for giving us hope where there was none.
Thank you for reacting to our shattering news as if it was your own – even though you do it over and over again with each family.
Thank you for being a clinical advocate – taking on each and every problem with a precision and logic that cut through the fear.
[credit: Jan Terry]
Thank you for knowing when to scrap the clinical and look us in the eyes as suffering human beings, not just the nearest and dearest to a medical chart waiting to be updated.
Thank you for backing us up and encouraging us to trust our gut instincts.
Thank you for letting us cry.
Thank you for giving us permission to laugh.
Thank you for being an encourager – always pushing us to see the very best and beautiful in the hospital staff around us.
Thank you for learning our names, our lives, and remembering them.
Thank you for learning every nickname we ever gave Chase and what he was like as a person – all on the outside chance that he might not scream at you when you came into the room.
Thank you for learning the names of Chase’s siblings and pieces of their stories – a heart-wrenching acknowledgement that Chase was not in a void and there was a different life outside the cancer.
Thank you for fighting for our future.
Thank you for investing in our present.
Thank you for seeing Chase as a life to be lived.
Thank you for being our advocate.
Thank you for all the things you did that we’ll never fully know or understand.
You somehow make the unthinkable more bearable, and for that, you will always and forever be considered a trusted friend and a precious member of our family.
Love always,
The Ewoldt Family
Today, Wednesday, January 25, 2017 marked the end of an era. Chase has been off chemotherapy and the scans have overall been stable for so very long that it is time: Chase’s file is being transferred from the regular neuro-oncology clinic to a place called the STAR clinic. The “S” in “STAR” stands for “survivor”. Chase is now officially considered a survivor of his cancer. I can hardly breathe for writing those words! And while he will still see many of the same teams of doctors (and there will be many teams – as Chase still fights a great many things), there will be one very significant change: today was Chase’s last official appointment with Dr. Rishi Lulla, the attending neuro-oncologist who has overseen his case from the first moments of July 31, 2012. We consider it the highest honor to have had Dr. Lulla oversee Chase’s treatment and care and we hope to see him in the halls of the hospital some day soon!
