Category: Family

When Five Days Turn Into Five Weeks

Sometimes I sit down to write and five days turn into five weeks when the sickness and weariness go long and the days are short.

Sometimes all it takes is five seconds to forget – from one breath to the next – that God has sustained this far and will continue to do so. And in those five pin pricks of time, well then, that is when the discouragement creeps and says “It isn’t enough…YOU aren’t enough.”

But here’s the truth: that voice of discouragement is both right, and terribly, awfully wrong (Praise God!). It’s true that I’m not enough, but…BUT…I don’t have to be enough. GOD IS ENOUGH and when I am at my weakest, he shows his strength to be most beautiful and right.

Boys getting ready for school and being, well, boys.

 

Celebrating Darcy’s 11th birthday.

And into these struggles fall the crazy but normal business of little kids (some of whom are suddenly not so little), my first engagement speaking at a women’s retreat (!), another writing assignment, and of course, the random child who stamped the name “Chase” on the family room window sill and refuses to confess.

Keep finding joy…

Keep breathing…

Keep remembering that He is enough…

Keep letting go of all the moments I think I have to be strong…

Preparing to speak with my amazing retreat-planner-friend, Carley

During an incredible weekend spent with some amazing Christian women at their retreat, I got to address some of these feelings and scratch the surface of what God has been teaching me in regards to living in authentic community with himself and others. Here’s just a hot second on applying what He gives us in suffering and love equally (the vertical) into our relationships and interactions with others (the horizontal):

“The concept of GRACEFULNESS is a necessary balm for the open and honest life. I’m not talking about the ability to walk without tripping, but rather, a GRACE-FILLED life – graciousness, really. Ephesians 4:29 takes us through what our speech should look like with others – nothing unwholesome, things that edify – GIVING GRACE TO THOSE WHO HEAR. Think of those around you almost like an immune compromised cancer survivor – it doesn’t take much to inflict damage and pain. Being authentic frees us in AMAZING ways, but it also makes us very, very vulnerable, and to this end, we bless and encourage each other to remain open by grace-filled treatment of one another. 1 Corinthians reminds us that love “bears all things, believes all things, and endures all things”. Think about applying this to your weekly interactions with others. Do you believe the best of others? Do you have the ability to see them or interact with them outside your pre-conceived notions? Practicing graceful living is a crucial part of Spirit-filled living and will help encourage an atmosphere of authenticity in any community because we will genuinely, dramatically be attempting to see each other the way Christ sees us: not without faults, but precious in the redemption plan all the same.”

Post retreat weekend rest with my “bald boy”

So back to your regularly scheduled programming, and somehow, even though five seconds turned into five days and then five weeks, my heart is full because God is love, he is enough, and this sustains the next breath.

I hope as you progress in this already passing-too-quick week, you are encouraged to find his strength enough to help you and that you find ways to live in authentic community with others and the ONE who loves you best.

Moment by moment.

Happy Easter – HE IS RISEN!

**If you are interested in having Ellie speak at an event, please contact her by email at ellieewoldt@gmail.com**

Oh, dear ones, thank you so much for all the love and prayers today!
First we were blessed by a modified testing regime – minimizing Chase’s seizure risk and bringing the test closer to three hours instead of four or more.

Chase is surrounded in the intense search for a working vein.

Then, we were completely overwhelmed by nearly two hours of IV drama – at one point, Chase’s bed was surrounded by vascular access specialists, child life counselors, nurses, and parents all trying to save an access point after four failed attempts.

And finally, we were so thankful to get to see lots of wonderful nurses and friends who cared for Chase during his chemo days.

Chase and his nurse today – one of his very first nurses ever – Meghan

Knowing me, I’ll write more later, and for now, we wait (our favorite) for results and a plan.

And how I wish you could have seen the boy once the pain and tears of all the needles were behind him. He practically swaggered through the halls, ordering people around and smiling with an engaging “Heelllooooo, Ladies” to any and all nurses who passed by.
It’s been quite a day, and it’s a good thing he’s so charming.

Moment by moment.

Finally resting after breaking his 18 hour fast

 

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…

Four rounds of 10,000 Reasons...

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.*

Talking to new friends about hope

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.

A dad and his boy

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.

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

 

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.

[credit: Jan Terry]

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! 

[credit: Dr. William Hartsell]

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