Cancer – Page 11 – CHASE AWAY CANCER

The Horizon

Survivor: /noun/ a person remaining alive after an event in which others have died

Yes and amen. It’s true. Chase is and has always been a survivor in one capacity or another, and now it’s official: research data and his medical teams officially call him a survivor too. But this is not the end of a story. It’s more like another stop on a long and winding journey – the very word Chase’s Dr. Lulla uses to describe what’s still ahead of us.

I used to say that the treatments might kill him, but the cancer surely would and I haven’t used that sentence in a long time. However, at this point, there is a bit of a sinking realization that those words still hold true. Here’s why and here’s where Chase is today – as shown through a list of all the lab-coated friends he has and the standard appointments he will keep all year, every year. THIS is survival*:

He has an eye team to monitor the radiation-induced cataracts, vision loss, and overall sight deterioration.
He has a social worker, neuropsychologist and behavior specialty team to help deal with brain damage-induced emotional issues.
He just garnered a urologist to monitor his development in conjunction with his endocrine system.
He has a yearly ECHO to monitor the chambers and strength of his heart.
He has quarterly hearing tests to monitor deterioration of high and low frequencies both.
He has an otolaryngologist (hearing/ENT) to monitor his ears and the losses therein.
He has a neurology team to monitor potential seizure activity and medication doses as well as emergency plans for his school staff, bus drivers, etc.
He has a neurosurgery team who continue to monitor his progress post-resection and advise on when to biopsy or remove the current growths.
He has an endocrine team monitoring his body and how it no longer wants to grow on it’s own (there is a lot coming up with this team, so stay tuned).
And despite the move to STAR clinic, he will still have a fully loaded neuro-oncology team who specialize in quality of life, recurrence, and secondary concerns.
He is followed and helped in school by extra aids, speech, occupational, and even physical therapists.
And then there are always the labs monitoring everything from his growth hormone abilities to his white blood cell counts.
Not to mention the near every doctor examinations of skin breakdown, scar damage, teeth, eyes, belly, neurological reflexes, and speech patterns.
Chase gets his yearly ECHO with his tech friend, Anthony

This being written and said…don’t let the laundry list get you down! Chase is a survivor and a thriver and some of the greatest minds and hearts of the human race and been forged in unrelentingly unique and pain-filled circumstances. And in fact, he’s one of the few among his cancer friends who doesn’t already have hearing aids, doesn’t need a walking aid or splinting assistance, and doesn’t require specialized therapies necessitating nearly weekly hospital appointments. Compared to many of his cancer friends, this is the shortest list and the easiest end of the proverbial stick.

Why publicize the laundry of survival? I guess the heart of this is to entreat you to hug a survivor – many of whom continue in a purgatory of treatments and treatment decisions. It’s to urge you to support research. It’s to turn words into the awareness that for many, the complicated cancer journey never really ends until the life ends. (And then starts a totally different, complicated journey)

Deep in my heart, this list is why I hate the MRI wait. It’s not so much the wait for the news of one scan (though, I do wait with baited breath all the same), it’s the wait for The Day (talked about in the book of Revelation) that gets to me. Even when the scan results are stable, Chase’s body is still broken. I’ve asked myself a million and one times why I still chafe when stability is exactly what we hope for, and I think this is why: our souls were not made for this brokenness. Even when it’s the best human outcome in all the crazy-awful, our souls cry out for the end of the hard journey; the days with no pain and no tears, the days where it will no longer take a village…scratch that…a giant urban city to care for my Chase boy.

But it isn’t that time yet. So we gather the pieces of our brokenness around us on the journey, clutch our list of specialty teams like the good friends and badges of honor that they are, pray for wisdom to pursue God’s glory in Chase’s quality of life, and cling to the hope that there is great beauty in this atypical life. For this is truly how we survive.

Moment by moment.

*Bob and I have been aware of every single one of these damages and side effects from the very beginning of this journey as we prayerfully made decisions and made our peace. There is no blame in these words or desire to shift our responsibility – just plain truth: the current conditions of pediatric brain cancer care are such that it is a life-long diagnosis whether the cancer recurs or not. The implication of ‘survival’ is that the patient lives three to five years from the date of discovery.

Chase with nurse Jessica in recovery (complete with red popsicle stains)

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.

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!

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.