Category: Cancer

Past, Present, and Future

Dearest Dr. Lulla,

Thank you.

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! 

[credit: Dr. William Hartsell]

Farther Along

Farther along we’ll know all about it
Farther along we’ll understand why
Cheer up my brothers, live in the sunshine
We’ll understand this, all by and by… Josh Garrels

The word is in and the news is out: we’ve been given the gift of more time. It’s a heady feeling and a deep one too as the responsibility of shepherding such an incredible, atypical life is something we do not take lightly.

In the last two days, Chase has had a complete brain and spine MRI, an ECHO, a hearing test, a procedure to clean his ears and check for tubes, and a hearing re-test – in addition to meeting with his endocrinology and neuro-oncology teams. The days have been physically and emotionally packed and Chase did an AMAZING job – even undergoing an IV and the MRI sedation process with less medicine than usual; a decision that made him far more cognizant during needle pain and separation from us.

Chase’s hearing is going, but is stable for now (no more excuses about “not hearing you say to clean up, Mom“…) and the ventricles of his heart are strong (something we do not take for granted in a post-chemo body).

And now, the moment of truth: the MRI…

STABLE.

The monitored growths continue to expand, but all teams involved feel optimistic that they don’t show cancer characteristics. The biggest concern right now is that the largest growth is getting close to a ventricle and that scenario requires both careful monitoring and possible intervention. There are also a few cavernomas (a cluster of abnormal blood cells) that are making themselves known and grown on the last few scans and those too will bear watching. In other words, for good, bad, and broken, Chase’s brain is showing the scars of its battle wounds.

This farther along day brings some answers, some more oxygen with which to breath, and a few things on which to take action.

First, while Chase’s official scans will be moved to even further intervals (a year!), he still needs to have small scans of the ventricles every six months to monitor growths and cavernomas.

Now, it is the time to prayerfully, carefully pursue growth hormone with the endocrine team as Chase’s poor, little body can’t do this on its own. More on this in the coming months, I know.

And last, well, the last thing I have to tell you deserves it’s very own written space. Stay tuned…

Moment by moment.

Chase checks out his MRI films with Dr. Lulla and Dr. Hartsell

Wait

As you sit at your computer, sit by your phone to read these words, we are waiting.

I hate waiting.

And yet, waiting is life and life is waiting. We wait for things to begin and wait for things to end. We wait in and for everything from the right person to marry to the right line in the grocery store. We curse it when it inconveniences us and bless it when it brings good news, but the one thing we can’t do is escape it. There is no express lane for the verdict of doctors. There is no easy button for life trials and ‘thorns in the flesh’.

Today, while we wait for Chase and maybe we hold our breath and say one more prayer as he drifts off to sleep, the truth is that Chase is one of many. How many people sit someplace waiting for life-changing news, life-stabilizing news?

Are you waiting?

Are you called to partner with someone who is waiting?

Today and always, we stand with you in the wait. You are not alone.

These things might be painful, but there is and will be beauty in them. There will be hope in them because God is good. And to this, we cling.

I wait for the Lord, my soul waits, and in his word I hope; my soul waits for the Lord more than watchmen for the morning, more than watchmen for the morning. Psalm 130:5-6

Moment by moment.

Yes And Amen

This coming Monday morning, we will stand outside the MRI machine and wait on our unconscious, brave boy once again.

There is no such thing as an unimportant scan for kids like Chase, but this one really is important and different from the others in a new way because, if, (yes, Lord, please…)… yes, if Chase’s results are stable, this month will hold his last round of appointments with his current neuro-oncology team. If he’s stable, he’ll be moved to a different clinic at Lurie with different doctors and staff, better and more equipped to deal in the living with cancer instead of the dying with cancer. Does one “move on” from cancer? Ha. But one can certainly get to another level in the game.

Having this bittersweet moment in sight feels like a tempting of fate. And the changes come and go with the days, weeks, and months, but the whisper is always there, stronger in the weeks preceding a scan – especially a big one: “It might come back. This might be it…” That moment I’ve tried a million times to imagine and prepare my heart around — even when I know I can’t. And the pre-MRI days hold a desperate struggle, but it’s hard to pinpoint the source of the black mood wrestling.

Is it fear?

Is it a renewed in-your-face realization that we are disgustingly powerless in this life?

Is it anger at staring down my own weaknesses and learned lessons over again?

The answer is probably yes, yes, and more yes.

But you know what else is, are, and ever will be yes? …yes and amen?

THE PROMISES OF GOD.

Don’t be afraid, for I am with you.
    Don’t be discouraged, for I am your God.
I will strengthen you and help you.
    I will hold you up with my victorious right hand. Isaiah 41:10

And yes, the worst may prove true on the scan, but there is someTHING…someONE who proves MORE TRUE.

Every word of God proves true.
    He is a shield to all who come to him for protection. Proverbs 30:5

Bring it on.

Moment by moment.

Chase with his favorite hospital security officer, John

Why I Keep Writing A Cancer Blog

Right now, there are no known cancer cells in Chase’s body…

For the last year, this one good but crazy thought has rolled around in my head; nearly taunting me as I write. It wasn’t until the last, short and quiet hours of 2016, as I looked to the new year that I finally had the courage to whisper-soft, consciously acknowledge the question that has been almost too big to consider: Why keep writing about a cancer life when there are no cancer cells? 

The essence, the seemingly most dramatic part of Chase’s story to date is already in writing, so why keep at it? …to what purpose? Who cares and who listens?

And by that last question, know that I don’t ask for general edification and kind feedback, but in genuine bewilderment: my boy, he carries a weight of rarity with him and because of all the 1-in-a-million type scenarios, we carry that weight too. And this weight; well, it leads to wondering where we fit into life. It leads to questioning how our story works into all the life stories around us – genuine, bewildered musing if, short of the ultimate redemption story and the end of time; there is a place for our words. Is there a belonging for this half life that is, in reality a full-and-a-half life? At times, making a big, written deal about all the ongoing feels like I’m trying to sculpt an emotional mountain out of side-effect-riddled mole hills. This is decimating…but not as decimating as a brain surgery or a death, so… 

Oh yes, my days (and often nights) are filled with atypical happenings that can almost always be traced to either cancer or treatment damage, yet, everyone has atypical and difficult things in their lives.  So, why write?

Then the answer came in the whisper-soft: cancer, side effects, hard days, painful seasons – all of it – when you strip away the specifics like mutant cells, broken bones, poverty, illness – all of it comes down to this: The unexpected. The unplanned. The unwanted.

Bobby and I used to joke about this during Chase’s treatment. We always said that one day, we’d write a book called “What To Expect When You’re Expecting The Unexpected” — possibly followed by a sure-bestseller: “What To Expect When You’re Expecting A Brain Tumor”. Super light and fun reading, for sure. 

But it’s true, really. The hard things are often the unexpected ones – the “please take this cup from me, God” ones and somehow, I forgot (and will surely keep forgetting) that the ultimate fight is surrender and joy in the unexpected.

So, I will continue to keep a blog about cancer – or rather, a cancer life as it evolves. And I will continue on social media too. Because even though there aren’t operating rooms and oncology halls in our daily life right now, I desire to see God in the unexpected and our stories are not yet finished.

Moment by moment.

Because the best way to handle the unexpected is to have a strong guide who goes ahead of you… 

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