Tell Your Story

It’s been a little while since I’ve written here, and the passing time has been filled with normal life things as we fill the wait time (’til more heart tests) with hope and family.

But dear ones, I just had to share this with you because my own heart is bursting.

This past week, Chase was in the hospital one morning for meetings and tests. After he came back home, he rested for an hour, and got on his feet, written speech in hand, and spoke to his entire school about his story. [his school has an amazing dodgeball event unfolding to raise money for the hospital right now]

Even a few days before he was supposed to do this speech-making, he said he couldn’t find the words. He also said he was too nervous…and that he felt like he didn’t understand his history. At one point, he even told the assistant principal that he simply refused to do it unless his teachers promised him that there would be no homework for the rest of the week (Oh, Chase…).

In truth, I didn’t know how he would do do this. His original tumor was in his language center and he would have to read his written speech, paper in one hand, mic in the other, balancing, all in front of hundreds of eyes and peers. It felt like a moment when all the weakness, brokenness and fears could converge.

But in the actual moment, dear ones, the fear just melted away. He waved off the help that was offered and stood totally alone in the middle of the polished gym floor and read out, loud and proud. His paper in one hand; the mic in the other. And he nailed it.

Don’t be afraid to tell your story, dear ones.

It may be hard to put your history into words, to put yourself before eyes and peers, but it will also be precious in ways you can only imagine.

-MbM-

Epilogue: Chase was given no homework on the day he spoke. His teachers are amazing.

Chase’s Speech [dear ones, he composed this himself!]

Hi, my name is Chase Ewoldt. I have been fighting two cancers for almost 11 years. When I first got sick, I was sent to Lurie Children’s in an ambulance and it became my far away from home. Getting cancer can be really scary, but the doctors work hard to find me the right treatments and help me feel comfortable. Even this week, I was in the hospital and I’m doing okay, but there are lots of kids like me every day who need help. So when it comes to dodgeball and raising money for Lurie Children’s… GAME ON!

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]

Waiting Well

Up until 5:30 on November 2nd, I could have told you Chase’s appointments and the general expectations through the end of this 2021 year. Everything was laid out…scheduled… neat, even. (…as much as we ever get with Chase)

But on November 2nd at 5:30, right as I was in the kitchen making dinner, I got a call from the oncology team, the result of which was that Chase needs more blood work and an MRI of his liver and kidneys. 

Dear ones, it’s a long and complicated explanation full of damages and inexplicable issues, and I’m sure everything will unfold at some point, but suffice to say that there is a chance that his liver is struggling through transfusion-related damage. And while they’re looking at his liver in the scan, they want to look at his kidneys too, because there is a noticeable growth there.

It’s more than possible that this is just a precautionary measure, and the growth is benign, but the news definitely surprised us. And honestly, it’s hard to hear that anything is growing in or on Chase – ever. 

Since that phone call, our minds have gone a hundred places and our hearts beat a rhythm of post trauma. And if I’m being honest, I’ll probably continue to vacillate between “don’t be silly, it’s nothing!” and “they said the spot in his thyroid was nothing too” until the tests are done and read. 

And that, oh that… that done-ness is a ways ahead of us yet. For reasons that only God himself knows, the earliest scan date is December 21st. So we will move through the holidays, through Chase’s birthday, through these next weeks in a season of more-than-usual waiting.

How we long to not just survive the wait, but thrive in the wait – to truly wait well.

The Saturday morning before I received the call from his team, I took Chase for early blood work and it was freezing, rainy, and dark. When I voiced worry and weather-complaining words, Chase said this, and it feels timely: 

“Mom, don’t worry. Jesus has lighted our way in the dark. He will do it again. It will be okay.”

And really…there’s no better reminder: He is light in the darkness and peace in the wait. It is well with our souls and our wait.

So we’ll sit with this a while longer…

Moment by moment. 

While my plan is to keep a chipper attitude and show God that I am a good student so he will bring my waiting to a close, God wants something even better for me. Rather than end my waiting, he wants to bless my waiting.”

Betsy Childs Howard, Seasons Of Waiting
[Chase wearing my glasses to make us laugh]

When Easy Is A Lie

Two years and a lifetime ago…

It was in the middle of a vortex of cold air sweeping through the January winter, the days dark and frigid, when we got the news. The results of the biopsy were in.

It was cancer. 

Again

In those first minutes, we reeled even though in a strange way, we had been expecting it. And in those first weeks, we heard one sentence stated a dozen ways and we believed it:

“This is the easy cancer”. 

In a way, this is a clinically supportable thought. The sheer number of days spent in the hospital, the number of moments we walked to the edge of life and back when Chase was two and fighting brain cancer – it doesn’t even compare. And yet…

Today is the second anniversary of Chase’s second cancer – a cancer that still sits in his body, making it outlast the actual time his brain cancer sat throughout his body by a good eight months. And these two years have been heartbreaking and complicated in so many unexpected ways.

You see, the problem with the word “easy” is that it is an immeasurable concept. There is no one-size-fits-all when it comes to the complicated complexities put before each of us. And the use of those types of words always end up pushing me down and hollowing me out. 

If it was supposed to be easy and it doesn’t feel that way, then there must be something wrong with me, right? 

And then I take those wrong, hard thoughts into the day with me and I walk into the processing, the tears and the pain not only unprepared, but feeling inadequate in all ways – because it wasn’t supposed to be this way. It was supposed to be “easy”.

And perhaps that’s the true cruelty of that word – “easy” – when life isn’t (and it almost never is), then my focus invariably turns to that second phrase:

“it wasn’t supposed to be this way”. 

But very few things from the start of the world were ever supposed to be this way .

Easy” makes us sit with our doubts.

Easy” is ripe ground for seeds of discontentment.

Easy” is sorrow incarnate when it comes to the table of suffering.

There is no easy. 

Dear ones, I believe with my whole heart there is only ordained.

And it’s in relinquishing the “easy” word that I find peace. …not in this life, to be sure, but in hope

With hope, the hard melts and reshapes. It never disappears. Life is hard and broken and will be until I see Jesus with my own eyes. But hope is the banquet at the table of suffering.

Hope is rich and beautiful even when the tears are rolling down my face and my heart is crying out “two years of this that was supposed to be easy…?!” 

Hope holds me up when I weaken.

Hope comforts me when I weep. 

Hope means purpose even in cancer … and second cancers.

So throw out the thoughts of “easy” with all its frustration and futility and “What’s wrong with me?” questions.

And hold on to hope with all of it’s “God is good even here truths. It won’t be easy, but then again, “easy” was never a part of the story. And what a story it is…

Moment by moment.

“Why am I discouraged? Why is my heart so sad? I will put my hope in God…”

“…each day the Lord pours his unfailing love upon me.”

Psalm 43:5a, 42:8a

Of Tornadoes, Good News, And Too Many Cancers

I remember the August 10th day specifically because there was a bad storm. It was hot, humid, and dark the afternoon a summer thunderstorm hiding a tornado ripped through our suburban town, taking trees and power and the downtown church steeple along with it. 

Our family packed bags in the dark and went to stay somewhere with electricity and internet, but I remember the date because it was the first time I saw Chase’s bruises.

That night, at the grandparents’ house, as I bent over Chase to inject the growth hormone into his upper thigh, I realized that there were small purple and black marks along his white skin – almost as if the nightly injections were causing injury. If they were on his shins, I might have looked to his brothers, because young boys are always running into and over things, but these were up too high, too far away from regular contact areas.  

So, the next day, I spent long moments on the phone with multiple hospital teams. And somehow, in the next few weeks, they changed the injection medication and checked all the other medications from every other discipline he sees. But nothing matched, and Chase began to lose weight, complaining of stomach pain all the time. 

All of the gastro tests came back fine, and then the preliminary bloodwork for blood cancers came back fine. And we talked about other, more invasive options for testing, but it seemed like there was too little to go on. So we waited.

For two months, we waited

It turns out that sometimes time proves to be its own answer. Because the longer the bruising lasted, the more worrisome it became, simply for continuing. Not the worrisome of a terrifying specter, but more that of a niggling doubt – the quiet “what if” whisper that keeps you up at night. 

So, after two months, the teams finally scheduled Chase for a bone marrow biopsy. It was time to conclusively rule out things like blood cancer, marrow cancer, and even the possibility that the thyroid cancer still tucked into lymph nodes around his throat had found his bones too. 

And on Friday afternoon, Chase’s preliminary results were released…

He is clear of these scary cancer pieces and we are so thankful.

After two months of no answers, we now know what it isn’t – and with a child like Chase, that is a big victory. So, for now, we are watching Chase’s diet and skin very carefully. Lab results show his nutrients are near perfect, despite his weight loss, and we continue to work with his teams to take care of him and make the best of whatever this is – secure, for the moment, in what it is not.

So, after two months, it would seem we can finally take a deep breath, finally just settle down to another school year, and time with the family, and just being…

However, on the day of Chase’s biopsy, the doctor performing the procedure came to speak to me while he was in recovery – two days before we found out his results. “Have you had that mole along his spine checked?” Her face was quite serious. “I don’t want to alarm you, but that is right along where he was radiated and I think you need to get it checked as soon as possible.”

Oh, dear ones, so, it would seem that we put one round of cancer concerns to rest only to begin another on Monday afternoon when he sees his oncology team with a dermatologist. And yes, skin cancer does not hold the deep fear of bone or blood cancer, but when I told Chase, he scrunched up his nose with a little growl and said; “too many cancers”. And he is not wrong.

When the doctor left the procedure room after telling me to check his skin, I actually laughed, not because it was funny, but because coming out of the operating room on an exploration for leukemia and worrying instead about skin cancer felt utterly ludicrous to me!

There simply aren’t words in this language to express the sheer insanity of this cancerous journey we seem to continuously be on. It is horrific, which is why we acknowledge research efforts, awareness months, and so many stories around us.

But Chase’s journey is also precious because he lives and the story has never been so clearly and apparently out of our hands. He could have been totally healed a hundred times now, and he could have been gone at least a dozen times I can think of in the last decade, and yet, Chase is still here and the journey continues. And I don’t know the reason, but I believe there is at least one, if not a hundred…or ten thousand.

So, yes, it is “too many cancers”, but nothing is “too many” for our loving Father. 

Purpose in the journey…hope along the way…choosing thankfulness with defiance… 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 (NLT)
Chase at the beach