Tag: moment by moment

Of Insurance, Hard Things, and TEN YEARS MORE…

It’s been a while and it’s been hard to put into words… 
This almost done Fall has been a strange, stretching time filled with both wonderfully normal things, and hard, intense growing things – or, at least I hope we’re growing from them.

Some weeks ago now, we began a struggle to have Chase’s insurance continue covering a couple of his medications. 
I will forever be thankful that we weren’t fighting for an anticonvulsant (a seizure med – without which, we’d all be in really big trouble), but one of the things we were fighting for was the medication that helps him with his executive function. And without it…? Everything is just MORE. There’s more energy and laughter, yes, but there’s also more anger, frustration and sadness too. And it’s all coming quicker – shot from a damaged and dis-regulated brain – faster than Chase or any of us can handle. 

We have been given so much grace and peace to do this thing. And yet, all the other things that don’t get done during this season – that’s where it hurts. That’s where and when the caring for our sweet boy pulls at whatever is left of our patience. It’s a weird in-between place where we know everything will be okay some day, but today is not that day. So we breathe, beg for extra grace, and walk… moment by moment, knowing as hard as it is for us, it’s equally, if not exponentially harder for Chase himself.

…and yet, dear ones, even as intensely weary as this season is, even as we liaison with his doctors and watch him carefully for signs of liver and heart issues until the January MRI, dear ones… tomorrow, Monday, December 12th, Chase Stratton Elliot Ewoldt will be thirteen years old. An actual teenager. 

In some ways, it’s a very strange thing because his chronological age will be 13, but his intellectual age is a sliding scale… and the age of his heart and bones after all that he’s seen and done…? It’s got to be near 90, if it’s a day. 

But I remember so clearly the moments at that first hospital conference table when we talked about the miracle it would take to get him to his third birthday. That third birthday was the goal…and while all the words were positive and hopeful, I felt it in my heart like I could see it in their eyes…nobody expected him to see the day.

So, to see the day…plus TEN YEARS MORE…?

That feels like an incredible moment in the hard journey. And we are treating it as such.

So watch this space all Monday… “$13 for 13 years” celebration kicks off here and I’m so excited to see how our celebration of Chase can impact life for so many others like him. *watch for the donation link in the morning!*

Looking forward with great hope…
MbM.

Photo: “Chase Running”, by Margaret Henry

Sing Over Me: On Grief and Joy

The end of July is a strange shadow season to me. Some years are easier than others, but not this year. Perhaps it is the marking of the first decade, but even now, the feel of the hot Midwest wind, the position of the sun on the earth; all of the July-ness seems to drag me back to a moment in time when the fabric of our lives felt like it had been torn in two. It is a memory now, yes, but I’ve come to equate this time of year with a deep grief and it tends to resurface every year no matter how I prepare or how far away from it we are now. And every year, I ask myself why it comes up, where it goes when it passes (which it inevitably does), and finally, how to hold it carefully with open hands and a purposeful heart. 

I think I will probably ask these same questions until the day I die, but as I wrestle and ask my way through them this tenth year, I think about everyone who ever stood bedside and wished for less suffering even while they’re thankful the one they love still breathes. And I think about everyone who ever stood graveside with a broken, bleeding soul, still breathing pain-filled thanks that there’s no more pain. My heart goes out to everyone who has ever smiled through their tears and everyone who has ever cried for no reason other than that life is just so…very…hard.

My heart is for you as I struggle with the questions again, wrestle through the shadows of a timeline long past, because I cried most of this last week. The good and the bad were all mixed together and that brings a lot of feelings.

It’s such a gift. 

We are so thankful.

Chase is a miracle.

But he’s also been hurting more than not for ten years and we’ve all hurt with him. We are tired and I know he is too. 

Thinking through all of these pieces, I cried because I couldn’t see the purpose for the shadows. I cried because I wanted to move past this late July part and move into the place where I could feel the light again.

But the light didn’t come right away as it sometimes does. I felt empty. And after fighting it and excusing it and even trying to tamp it down all week, I realized that it is not so bad to need to grieve. It is not wrong to weep for the brokenness that is as ever present as Chase’s very life.

We celebrate Chase, but we weep for him too. Does that make sense? I hope it does. It’s how I can smile as I watch him run even as my eyes fill with tears.

The good and the hard rarely come in their separate turns – have you ever noticed that? More often, they seem to arrive all wrapped up together in such a way that thankfulness and grief walk hand in hand – usually with a white-knuckled grip. 

So where did I land in my grief this time around? I landed here: there is One who knows; who understands. Psalm 56 describes how our tears aren’t wasted to Him. Our grief isn’t meaningless and our struggles are important and known. 

You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.

Psalm 56:8 NLT

So, if you want to, if you need to today (as I have needed to this week)…I hope you are able to cry. It is not a bad thing to mourn all the things we wish were other than what they are. And afterwards, dry your tears knowing they were Seen and remember with me (as I remember in this Chase fight) that while the pain and weariness might feel like forever and a day, it’s only a dark night and the dawn is coming. And when the dawn arrives, there will be joy once again.

Giving raw thanks for Chase’s life and unfolding story…

Moment by moment. 

With his love, he will calm all your fears. He will rejoice over you with joyful songs.

Zepheniah 3:17b

A Brief History Of A Long Road

DO YOU EVER WONDER HOW IT ALL STARTED…??

On Sunday, Chase’s marks ten years of cancer fighting. TEN YEARS is quite the journey, dear ones, isn’t it? In case you’ve joined us more recently, or in case you’re curious or it’s been a while… here’s what brought us to this place:

Just before dawn on Tuesday, July 31, 2012, a six-year-old Darcy woke us to complain that Chase – only two and still in his crib – was “moving around and won’t stop”. 

“El…! You need to come here! Chase is having a seizure!” The mix of deadly calm and worry in Bob’s words propelled me from the bed before my eyes were fully open, heart racing. 

And just like that, we woke to the first day of a completely different life, never to return to the one we had known ’til then.

Within hours, we would learn that there was “a large mass” shoving one half of his brain into the other (causing the seizure) and that the hospital we had been taken to by the ambulance wasn’t equipped to deal with cases on this level.

By noon, Chase had been transferred downtown to the brand new Ann & Robert H. Lurie Children’s Hospital of Chicago facility. 

Within hours of the transfer, we had learned that he was having near constant invisible seizures and he was moved to the intensive care unit. 

By early Thursday morning, 48 hours later, we had signed papers, said goodbye, and handed our little boy to a team of neurosurgeons.

The surgery was mercifully short as brain surgeries go (under four hours), but the news was a worst case scenario: While the initial tumor had been successfully removed, Chase’s lead neurosurgeon gently explained that the pathology was not only deeply malignant, but also highly aggressive, and that he had actually visualized cancer cells all over the top of his brain…too numerous to be removed. The scans backed up the doctor’s assessment. There was cancer all over the brain, in the spinal fluid, and lining the spinal column. 

The plans were placed, the words were guarded, and nobody expected Chase to survive his third birthday. 

But he would…

The next nearly two years brought seemingly endless complications, procedures, and days spent living in the hospital. We moved in with my parents, who cared for our other three children. Chase went through so much chemo, so many days of radiation, and bag after bag of transfusions – so many interventions that Bob and I l have since lost count.

He finished treatment sixteen months to the day after starting and immediately began extensive therapies to improve his quality of life. 

He could speak, but he didn’t understand what words meant. 

He wasn’t growing.

He couldn’t hear well.

He couldn’t see well. 

He had almost no short term memory.

And we were informed that these would most likely be just the beginning of side effects. 

There were routine scans every few months.

A year later, the MRI picked up a small growth and we battled relapse fear – another MRI after six of the longest weeks of our lives showing what was most likely a radiation damage and he was diagnosed with benign tumors/cavernous malformations.

The next summer, he was officially diagnosed with significant hearing loss.

The following spring, he had two separate surgeries to remove cataracts and try to improve his vision. 

Three weeks after the first cataract surgery occurred in 2016, Tyndale House Publishers published my labor of love – “Chase Away Cancer” – the story of those first six years and some of the lessons we’d learned along the way.

We settled into post cancer complications and life.

A little over two years later (after the longest season of only routine appointments and few emergencies) an MRI pick up strange thyroid growths and in the last week of January, 2019, Chase was diagnosed with thyroid cancer and had his entire thyroid removed. 

A few months later, Chase had his first visible seizure in seven years. 

Only weeks later, his thyroid site showed cancer in a couple of surrounding lymph nodes and despite a full body scan showing the spread to be contained to the thyroid area, Chase was scheduled for radioactive iodine therapy two weeks before Thanksgiving. 

Since that time, despite frequent health anomalies that seem to require lots of appointments, tests, and even occasional surgeries and procedures, Chase continues with his two-cancer diagnosis – the primary never having relapsed, the secondary having been stopped from spreading. 

We have no idea what comes next. Although we will be meeting with a genetic specialist in September to try and better understand why Chase’s body succumbs to proliferating cells the way it does and if we can possibly protect him from ever having another diagnosis.

His story has been shared from teary hospital rooms to history-packed halls of the White House. And if we’ve learned one thing in ten years, it’s that Chase is a precious law unto himself, a broken, beautiful story that only God himself knows completely.

As always, thank you for coming on this journey with us. 

Moment by moment. 

[Chase’s family includes Dad (Bob), Mom (Ellie – who is the primary writer on CAC), older sister Darcy (16), older brother Aidan (13), and younger brother Karsten (10)] 

Steady On

The wind was just enough to throw the large snow flakes into a mesmerizing swirl as they fell, fluffy and quick, through the winter storm sky. When they fall like that, the headlights don’t cut far enough and even my depth perception changes. I watch the light on the dashboard flash orange, warning me of something I was already feeling beneath me: my car’s traction is slipping…

That’s what it’s like to drive in the winter storms. 

Have you ever been there? …tried it? I bet you know exactly what I’m talking about.

Traction is a concept that changes minute to minute and seemingly, the only way to hold on to it is to keep a pace that is so slow a snail could keep up with you, a pace that is half boredom and half terror as soon as you feel it all sort of slide out from under you, as you feel control ceded to something much bigger.

And it hit me in that moment when I couldn’t see and the warning light flashed on: snow driving is a lot like life-living in the wintery, hard moments. 

The way ahead is often obscure and some days it feels like there’s little between boredom and terror. You doubt the light will be enough to cut through it. Oh, and the storm that started it all, you know how it goes… the storm only ever seems to show up on that one day that you have someplace to be, something else to do, too much going on to think about slipping, sliding and black ice moments, right?

But with life, as with the storm moments, the only way out is to push through it, not like a battering ram, but slow – so slow. I want to get to my destination. In the storm moments, the speed that should be possible on the road and the speed that I can go are two very different things and oh, it’s almost laughable how even on a silly suburban road in the middle of January, it’s the “should” that knocks at the very door of my identity. 

But no, the only thing I can do is go ever so slowly forward and pray that the tires with their grooves – the very grooves that were carved into them when they were made – grab the road and hold it fast just as they are supposed to do. 

Do you see it like I did in that road moment, dear ones?

All the ways we move forward, there were things carved into the heart of us when we were made – before we were made, truly. And it is this that hold us to the road, that pulls us back when we slip, keeps us slow and true when the way ahead feels obscured, that keeps us from losing patience and grace when it feels like the very sky is falling around us.

So don’t chafe in the storm when the going is slow and frustrating. There’s more to the storm that you can see. And perhaps you were designed to hold steady – for this very day.

Moment by moment. 

You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.

Psalm 139:16

THANK YOU

See us running and hugging and freaking out a little? …crazy joy smiles on our faces?

Today, that’s what we’re doing because 1) our miracle boy turned 12 years old yesterday, and 2) because you put together the MOST AMAZING action in the last two days.

In less than 48 hours, the Chase Away Cancer community and friends gathered OVER $13,000 for Lurie Children’s Hospital and the Anthony Rizzo Family Foundation in honor of Chase’s 12 years!

You guys!

YOU DID IT!!!!!

I wish you could have heard the gasp Chase let out when I told him the news.

Dear ones… this was a VERY GOOD THING that happened this weekend.

From the bottom of our hearts –

THANK YOU

Moment by moment

[all photos: Margaret Henry Photography]

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