Neuro – 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)

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.

Family vacation and family prayer, Lake Geneva, January 2018

Of Waiting, Believing, And A Rusty Leg

Yesterday was not the day we expected.

The outcome could have been so much worse and for that, we praise. However, it was a shadow day, a “cancer” day, a reminder that we live in and with something that can threaten whenever it wants. It was a day for remembered dependence on God in ways that summer pool days don’t always impress upon me.

At the end of it all, we were all six under the same roof with no hospitals or sirens and we slept – truly slept – and for that I’m thankful.

At this moment in time, here’s all I know for sure: there’s a mercy that’s new every morning and a proven refuge in times of trouble.

Yesterday was a day when it was easier for me to throw up words onto social media sites, but I’ve copied them here today. May they encourage you to wait on Him, trust in Him, and see your wait as a beautiful part of the journey.

Moment by moment.

Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.” Psalm 91:1-2 (NLT)

10:15 AM —

In the first hour of this morning’s summer camp, I got a call from a friend at church indicating that Chase had been brought in complaining of a headache, right eye pain, and lack of feeling in his right leg – even some “dragging” of the leg.
[cue the parent panic…especially as his tumor presented on his left side]
By the time I got to him, he could walk, he’d never stopped talking, and he showed no signs of seizing, but he was so tired that he spoke hardly at all (for those who know Chase, you know this is out of the ordinary) and slept for a few hours following my bringing him home.
He’s now more “himself”, but keeps resting and sleeping – saying his head hurts and his leg feels “rusty” even though it works.
In times like this, it feels impossible not to panic, but we are trying to live in grace in the moment.
Right now, for me (Chase’s mom), that looks like this: setting a timer for 30 minutes and only checking my email when the alarm sounds – to avoid frantically opening the mail app on my phone every 20 seconds in hopes of hearing from Chase’s doctors.
It could be a virus, it could be his growth hormones, it could be nothing, it could be something… I don’t know and part of me doesn’t want to share this, but I’m writing it out because I believe I’m not the only one who is having to actively pursue calm and joy in the middle of a day I didn’t expect.
Peace is not coming naturally like breathing, so, I am CHOOSING it.
Choosing peace.
Choosing hope.
Moment by moment.

7:30 PM —

You all are so awesome for walking this journey with us.
I just heard from Chase’s doctors… apparently it could be one of a few things (no easy road for our boy), but it was most likely either a seizure of some kind, or even more likely, some sort of migraine episode…because, apparently, kids like Chase start getting more/frequent/painful migraines.
Oh, the side effects of breathing…
Only time will tell what really happened today.
If this is once-and-done, it was probably a migraine, but we need to watch ever so closely and at the first sign of a repeat performance – call. Don’t pass GO, don’t collect $200… CALL.
So, the weird day is done… And the weird life continues.
I want to be free of the wait for “the next thing”, and yet I choose to believe the wait is as purposeful as every other moment.
Tomorrow is a new day with new mercies.
Taking it moment by moment.
Thank you for walking this with us!

Chase still has a headache, but perked up in order to help with his evening shot.

Sufficient Grace

I sat on the floor, the exhaustion depressing like a physical weight on my heart and shoulders alike.

Chase curled close, sniffing and crying, “Mom, I’m ready to make it right. I’m so sorry for getting angry. I promise to never, ever do it again.”

My heart screamed but my eyes were blessedly calm despite the pressure of overwhelmed tears. “It’s okay, sweet boy. I forgave you even before you asked. Hey…look at me…look at my eyes. Do you know how much I love you?”

He nods, sniffs, and runs away, heart light once again. The anger leaves as quickly as it comes.

No matter what happens, he needs to understand grace at my hands. If I fail all else, please God, let me be your hands to him.

But oh, my hands…how they hurt. Before the peace comes, there’s often scratching and biting. For, in this outside-the-box life, this is emotion to Chase. And the primary thing is to keep him and everyone else in his direct vicinity safe. So sometimes that means taking one for the team; for the family…literally.

As I sat on the floor, I wanted to let loose ugly, deep tears, but there are some things that seem too heavy and weary.

“God. I’m tired of the struggle. I can’t do this. I mean, I did it, and I’ll do it again, but years and years of this? I can’t, I can’t, I. CAN’T…”

And then, in the desperate stillness, I -who rarely ever “hear”- I heard. Oh, I heard as clearly as if someone stood in the cloudy room with me:

“My grace is sufficient for you.”

That was it. No answers, no fixes, but one thing that transcends the hurt that’s been and all the hurts that are yet to come.

Even as I prayed to be grace to Chase, my Abba became the grace answer to me.

The road is not easy, but I know I will have what I need.

Moment by moment.

“…I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.” 2 Corinthians 12:8-9 (NLT)

Note: This picture story was published with Chase’s knowledge and permission and he even volunteered to take the picture. He is not proud or hurt, but understands that we share wisely to encourage others they are not alone. Please know that we do not take this particular challenge lightly, and that Chase’s case is lovingly monitored by social workers, neuro-psychologists, neurologists, neuro-oncologists, neurosurgeons, and behavior therapists. I hope this bit of raw openness on survivor challenges encourages you that you are not alone in your struggle. If you have any questions, please feel free to contact me privately at ellieewoldt@gmail.com. Blessings.

You Are Loved

“The faithful love of the Lord never ends! His mercies never cease.” Lamentations 3:22

“I can’t do this.”

His precious little mouth contorted on the one side – the way it always did when he became scared. “Mom, I’m not a first grader. I can’t do this. I need to go back to kindergarten.”

Behind his back, the window glowed with the last remnants of the sunset, signaling night…the night before school.

Chase shook his fuzzy, scarred head with each new sentence of voiced fear. After months of proudly proclaiming his being in first grade now and – including outrageous claims for privilege (“I should get to stay up late at night and watch Netflix because I’m a first-grader now, Mom.”) – the time had finally come and he felt himself unequal to the road in front of him.

His words flooded my heart as I heard echoes of my own timid voice in memory. Through his cancer, the ambulances, the hospitals, childbirth, even marriage… big things. Life things.

I can’t do this. God, I’m not ready for this.

I’m too young…

Too immature…

Too imperfect…

Too scared…

I need more time to prepare.

To get it right…

To be aware…

To make it count…

But here’s the thing with life… When I am blind-sided with my weakness and need, God is aware of the plan – my perfect life plan. And when things feel underdone and undone, out-of-nowhere, frenzied and stressed, He alone knows the ways to make them count for my good and His glory.

I knelt in front of Chase and put my hands lightly on his arms. Oh, how I wanted him to listen and connect with the words I needed to say. “Chase, you can and you will – because you are ready. It doesn’t feel like it yet, but you’re ready;” I paused, searching for the right words, “And, you are loved.”

You are loved.

In the hard moments when our brains acknowledge our good and His glory, but daily life throws gut punches that leave us lacking, gasping “I can’t do this”, it comes down to those very few words: I am loved; you are loved. These are the conduit from our head to our heart – from knowing what’s true to believing and resting in what’s good: His faithful love.

This had become a key sentence with my darling cancer survivor over the last several months. With his age and progression comes the increasing sense of “other”. He knows he looks different from those around him and often reacts differently too. He is strong, but it takes precious little for the remorse and regret to set in – and the fear too. I watch him feel unequal to the road in front of him and know beyond a shadow of a doubt that only perfect love can conquer this fear. And I know because I feel my own weakness, sadness and fear.

So, in the sunset before that August big day, as Chase lay his head down to sleep in that sixth year of a life we never thought he’d have, I grabbed the first piece of paper I could find (for it’s the words that are most important, not on what they are written) and I wrote what I believe…what I know and too often forget: You are loved. And then I tucked it, folded small into the blue top pocket of the crisp, new backpack to be found on the bus the next morning.

For truly, these words give a strength and joy like none other. And with these words, we are ready for anything life may bring – in His grace – moment by moment.

“See how very much our Father loves us, for he calls us his children, and that is what we are!” 1 John 3:1a

“Repeat them again and again to your children. Talk about them when you are at home and when you are on the road, when you are going to bed and when you are getting up. Tie them to your hands and wear them on your forehead as reminders.” Deuteronomy 6:7-8

Category: Neuro