Chase – Page 7 – CHASE AWAY 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.

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

In Which Chase Discovers His Mic

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During a recent event at Macy’s historic Walnut Room (which is a story for another blog entirely…), our family had the pleasure of meeting Jon Hansen, a news correspondent and host on Chicago’s WCIU.

Our children immediately fell in love with his energy and joy, and so, when Jon invited Chase and me to come to the west loop to record for his current events show, we were thrilled to join him.

It was a joy to talk about Chase’s cancer story, finding hope, amazing organizations, and other things that you hear me say all the time, but in truth, the best and funniest part – the show stealing element – was, of course, Chase himself. Keeping track of yourself in front of a television camera is one thing…keeping track of a squirrelly six-year-old who just discovered his mic is another thing entirely. 🙂

Enjoy!

Interview link: http://www.wciu.com/videos/chi/nowchicago-chicago-charities

~MbM~

74 Days And A Really Special Room

Somehow, 74 days have passed since I last wrote here…

There have been so many things I’d like to share with you, but I’ve let the words get swept into life business. Each weekend, I’d think “This next week, I’ll start again…” and each week would slip by while I thought of this site like a long lost friend I’ve been meaning to call.

To start with, I want to share with you how we moved out of our house for a few days to allow the Ace Hardware Foundation, Children’s Miracle Network Hospitals, and Ann & Robert H. Lurie Children’s Hospital of Chicago to move in…and remodel our family room.

15134599_706649942821046_176189798185266393_n — Chase deals with moving things out of the living space…

Change of any kind is especially challenging for a child like Chase, but he weathered it nicely and wow, the look on his face when he saw the re-made room… WORTH IT.

We are so blessed!

Enjoy!

~MbM~

Our most humble thanks to Lou Manfredini of HouseSmarts TV, design ninja Nathan Fischer, and the Buikema’s Ace Hardware employees who put together this amazing gift.

Keep Running…

He contemplates a word he will never understand

Sunday, 31 July, 2016

Just before the sun rose on this day four long and quick years ago, the last unknown action of a growing brain tumor was finally known as my boy seized in the wooden crib of his baby years under the waning moon.

We should not have had even six months, and yet somehow, we’ve had four years.

They have been long and full of shadows and anger, but also precious with more joys than we deserve.

And as the shadows lengthen into longer life than we’d ever have dreamed, and we persist in this atypical life and it’s challenges, the words of Matt Papa have been close to my heart.

Lord I’m tired…
So tired from traveling
This straight and narrow is so much harder than I thought.
And on this path I’ve met both doubt and pain and I’ve heard their voices say ‘Yeah, you’ve given all you got.’
But there’s a cloud of witnesses – the ones who’ve run this race – and even louder than my fears, they’re crying: ‘Warrior, lift your face!
And keep running, keep running, don’t lose heart, and don’t you give up now.
Don’t turn around.
You’ve got to find a way somehow to keep reaching; keep fighting.
The pain cannot compare to the reward that will be yours; that waits in store for those who just keep running.’
Don’t turn aside…
No compromise…
Just lift your eyes to the glory that’s coming.
If you’re like me, you feel like you can’t go on, you’ll never see the dawn and you’re just about to break.
But don’t stop now.
Know that every sacrifice will all be worth the price when you finally see His face…
Just keep running…

Moment by moment.

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