Lurie Children’s – Page 2 – CHASE AWAY CANCER

To Prove What We Already Know

Early in the dawn, we will make the well-worn journey again.

Try to sleep…

Don’t eat anything…

Try not to feel sick…it’s going to be okay…

Here’s the favorite blanket…

Answer the needle fears over and over again…

Answer the most heart-breaking question of all, because it somehow always overflows on a hospital day: what if I get the cancer again?

Chase uses his “name stamp” (used for signing books) to stamp Dr. Lulla’s hand

How do you explain that hours-long, intense testing has nothing to do with cancer? …yet has everything to do with cancer? It all feels the same when you’re a little kid. The same rituals, pains and fears; never mind that there may or may not be atypical cells attacking. It all feels cancerous and scary when you’re seven.

But tomorrow morning isn’t about what’s happening. It’s about what’s not happening. Chase’s body doesn’t want to grow on it’s own anymore, so for the first time in a long time, he’ll be admitted to the day hospital and they’ll attach needles to inject medicine and more needles to take blood. And then they’ll do both over and over by the hour until they have enough to prove that cancer damages. Because the sad truth is that there’s no funding if it can’t be proved on paper, submitted, filed, bottom-lined, than our reality is just that: ours alone.*

There is no self-pity in that truth, I promise. There’s shock and sadness; a deep desire to be known, but not pity. Not now, not today. Because I believe above all things that this tomorrow and all the days have a purpose we do not yet know and cannot yet appreciate fully. This test day tomorrow is just more gazing into the mirror and beholding an unclear, somewhat painful reflection.

We will breathe through the pain of damage and the desire for wholeness, but the heartache is so very real, and right now, Chase’s fear sits on the surface of, well, everything. He has struggled all week, including throwing off constraints where and when he can (like refusing to get on the school bus) — anything and everything to try and find control when he has so very little.

Will you pray for Chase tomorrow? We’d so appreciate it.

Seeking the light and momentary perspective...moment by moment.

“This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” Joshua 1:9, NLT

[All pictures are courtesy of Jan Terry and Lurie Children’s from a wonderful event earlier this week]

*All my love to the brave souls fighting their insurance companies for the treatments they need.

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

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.

In Which Chase Goes Golfing

These days, it feels like we are waking up to bad and worse news every day in which coups and killings mix with hate and stealing. At times, even our words aren’t our own and too many are out to take advantage, so today, this week, I want to share something amazing with you.

These pictures represent a whole day of GOOD.

Nope, more than that, actually: a day of WONDERFUL.
It was a day last week when people came together around a common cause and lovingly, sacrificially sought to make a difference in the lives around them.

People were stepping out of their comfort zones left and right and you know what was left on the course?

Love and laughter.

We started as strangers and became family.

And to what end?

Nearly a million dollars raised for Ann & Robert H. Lurie Children’s Hospital of Chicago.

So, check it, people…

No matter what’s in your newspaper, your in-box, or your social media feed today, there are a lot of amazing people out there quietly doing wonderful things all day, every day.

-MbM-