CHASE AWAY CANCER

Making Dust In The Wind

The kids are finally out of school and summer programs are easing into projects and days at the pool, but there’s one thing that I’m still trying to wrap my mind around. I’ve shamefully fought it for three years now, dreaded it and done everything I could think of to ward it off. But this year, I’m giving into it…embracing it. It’s a part of us because he’s a part of us.

People with low executive function need boundaries – a daily paradigm, as it were. Or, at least this is the truth of Chase. And it’s a truth that makes summer and it’s loose, last minute plans a waking nightmare. Okay, perhaps not a complete nightmare, but it definitely ranges from marginally uncomfortable to “Mom’s going to sell y’all on E-Bay if you don’t give her a moment of peace!” For Chase, it’s not enough to know there will be a lunch, a dinner, and some kind of activity for the day. If he doesn’t know what’s for dinner, for lunch, what we’re doing and approximately when, he becomes agitated, confused, and will repeatedly ask (and by repeatedly, I mean every few minutes until we do whatever it is he’s asking about – so sometimes, for hours) what comes next. Without a doubt, low executive function and short term memory loss are a wicked combination. (and if you don’t believe me, please feel free to reference last month’s Facebook post on Chase’s burying his sister’s cell phone in the front yard)

For years now, I have only been able to cope with life by living in the moment. Not worrying about the next thing ’til it’s in front of me. If you don’t commit, then you will never be disappointed by what’s not going to happen, right?

And yet, now, I’m committing. Every day. For me. For him. For sanity. I’m committing to the day.

I will push him: he doesn’t always get to know every single event of the day in the exact time it will occur. But he will push me too: I need to have an idea and have it written out because it helps him feel safer – better.

This is love.

So, I will learn to plan the next day in faith and he will learn to live this moment in grace.

And we do it all in chalk so the plans are only ever dust in the wind…

Moment by moment.

Trust in the Lord with all your heart; and do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take. Proverbs 3:5-6 (NLT)

One Hour One Child

Hello, dear ones –

On Wednesday, May 30th, I’m so excited to be teaming up the St. Baldrick’s Foundation to share Chase’s story and raise support for clinical trials!

Will you please consider joining me at this free, one-hour event One Hour: One Child?

When: Wednesday, May 30^th

Time: 4 – 5pm

Location: Hyatt Regency Chicago

You’ll have the opportunity to support St. Baldrick’s funding of clinical trials and directly impact the health and lives of kids (like Chase) who are battling cancer. (plus…hang out with me, of course!)

Space is limited – Please RSVP by Friday, May 18^th to Serena.Bernolak@StBaldricks.org or 626.792.8247 ext. 253.

See you there!

~MbM~

www.stbaldricks.org/onehour-onechild

Stuff, Things, And Chase Stole My Book

…or, as I like to call it: “Our joint office”.

Yes! It’s the first day of May, the kick-off to Brain Tumor Awareness Month, and that warrants a rather questionable video of me telling you whatever is on my mind.

First of all, THANK YOU so much for all the texts and messages in response to my little update yesterday. I so appreciate all your encouragement and prayers – feeling so loved. Please continue to pray that the Lord would guide and direct me in every step. I know the desire in my heart, but I also long for my heart to mirror God’s will, even if that means changing things up.

Next… Brain Tumor Awareness! Dear ones! Chase Away Cancer (the book link to Amazon) turns TWO today! And in honor of that, I explain why you need to go buy one, share it with a friend, give it as a gift, and basically all other manner of shameless promotion. Guys, I believe in the message of this book with every fiber of my being. Pass it on.

And last, you’ll have to watch the video because … wait for it … Chase is a book-stealing book stealer. Ah…

Moment by moment…

Ellie

PS: Y’all can @ me anytime on Facebook (Ellie Poole Ewoldt, Instagram (Ellie Poole Ewoldt), or Twitter (eleanorewoldt) – I love to hear from you!

PPS: If you think of us tomorrow (Wednesday 5/2), please remember to pray for Chase while he meets with his endocrine team at Lurie. Our hope is that the growth hormone shots are working and that Chase’s system is as strong as it can be.

Green Popsicles And Good News

From January 8, 2018 – 8:57 AM…

The separation never gets easier.
He stayed so chill, fought the needle and then breathed (after 27 minutes of struggle).
And I thought he was unconscious already when his brown eyes fluttered up again and he sighed “I love you so much and I’ll miss you, Mom.”
Is it possible to be totally brave and vulnerable at the same time?
Sleep sweet, my boy. ❤️

From January 8, 2018 – 5:46 PM…

Joy comes in the morning, but sometimes it comes in the evening too…

This boy.
It was a long, exhausting day but there is GOOD NEWS.

Chase remains NED! NO EVIDENCE of DISEASE!!

The cavernomas grew again – those small spots they’ve been monitoring in the brain – but so far, nothing is hampering his day-to-day life, so even surgery gets to wait for a bit longer.

The bottom line? More things to watch and monitor, but none of those things go by the name “cancer“, and so we’ll take today as the great blessing that it is.

Moment by moment.

Loss, Love, And Peace

On this Monday, as you rise and begin the day, Chase will be unconscious in an MRI tube – his first full scan in one whole year. This is the longest he has ever gone without anyone peeking inside his brain since before his diagnosis.

It is a good day because we look forward to greeting hospital staff friends, the special post-scan Starbuck’s hot chocolate, the promise of good results, and (dare I say it?) an extra day off school.

But it’s also a scary day because even though it feels like we do it all the time, he and I still tear up when unconsciousness separates us. It’s a very long day by the time full brain and spine are scanned, sedation recovery is achieved, and he meets with his neurosurgeon. There will be the missing of family and school friends as everyone goes back but him, and then there is the shadow of the “What If…” as always. Do you weary of hearing about it as much as I tire of acknowledging and fighting it? What if the MRI results aren’t great? I have no reason to think they won’t be good, for the brain usually has “tells” that exhibit in things like speech and muscles, but still, this is the nature of the “What If…” – the fear doesn’t have to make sense. This is the terrorism of worry.

This weekend, even as we’re still in family vacation mode, Chase grows increasingly more pensive and I know he feels the upcoming day. I know Bob and I do too.

As I pray, and foolishly attempt to prepare for the things I can do nothing about, I find that there are two very distinct paths my mind travels again and again. On the one hand, there is the very distinct memory of those who have gone before. Darling Mia who still tears at our heart with the missing of her. Wonderful Margie who fought for Chase’s book, fought cancer twice herself and will be laid to rest even as Chase rests in the MRI.*

Those who have gone before and those who fight on are always close when you step up to the battle lines. This is just how life works.

And then, on the other hand, there is the very clear picture from the end of the bible, the book of Revelation where there is the completion of all life and all things and all our hopelessness is wiped away in triumph and the eminent worthiness of God himself.

So, here it is: We wait in moment by moment grace on the edge of life and change once again, and we hold dear to those we have and do love even as we are held close to the One who loves us – and in that, we find peace and the ability to keep breathing.

“Whatever my God ordains is right…” Stephen Altrogge

Loss, love, and peace… moment by moment.

“Then I began to weep bitterly because no one was found worthy to open the scroll and read it. But one of the twenty-four elders said to me, “Stop weeping! Look, the Lion of the tribe of Judah, the heir to David’s throne, has won the victory.” Revelation 5:4-5a

*In loving memory of Margie Watterson, my beautiful, amazing Tyndale House publicist who fought above and beyond to put Chase Away Cancer in front of as many people as possible. Cancer might rob the breath of earth, but will never erase the joy and bravery of a life well lived.