Author: Ellie

Back in October – both a year and a lifetime ago – Chase’s bone marrow biopsy reported he had no cancer in his blood or bones. But his skin kept bruising, his tummy kept hurting, and he stayed very thin, unable to gain weight even as I watched him eat; even as I knew he was picking up enough calories. 

One night, I watched him have energy and hunger. It was the first time he’d had energy all day and I watched him systematically devour three slices of oven pizza over the course of family dinner and movie night. Three whole slices! And still he appeared near emaciated. Could this still be his endocrine system?

So, the following week, I called his endocrine team. And after the call, I wanted to laughed so I didn’t cry, because sometimes the name “Chase” feels like a synonym for “conundrum”. Some days, my boy seems born to a state of confusion and trouble with the inevitability of sparks flying upward in a dark sky. 

You see, Chase’s inability to gain weight, his exhaustion and even lack of energy might indeed be laid at the door of his non-existent thyroid. And it wouldn’t be that very hard to fix, but crouching at that same door are still a few small pieces of cancer, which means that opening the door for Chase to thrive – even just a little bit – might unwittingly be opening the door for Chase’s cancer to thrive. 

The decision -like so many we’ve made before- felt simple, and yet precarious and complicated. He couldn’t continue to waste and tire, but the thought of our helping him also helping his cancer…? It made my heart physically ache.

In November, we put our hand to the latch, lowering his doses just the tiniest bit and not even every day. And they took more blood to check.

And then in December, we turned the knob, lowering his doses just another tiny bit so that it was every day. And they took more blood to check. 

And then in January, in the middle of hospital-quiet weeks with less appointments, we pushed the door open just a tiny bit more because while he still has bruises and tires too easily, he has been able to gain a little weight and his stomach doesn’t hurt so much anymore. And they took more blood to check.

But this time, I got a notification on Friday night, just a day after they took his blood: it came back from the lab and one level went up and the other went down. And it seems that opposite directions are not good directions when it comes to things like thyroid cancer.

These numbers are out of bounds, and that means our quiet season is officially out of time. And the ones who decide – who sometimes move like grains of sand counting out time – seem to be moving much quicker now. We knew another full-body scan would come sometime, but now it needs to come soon.

So it will be one week to lay the foundation. And then another week to do the involved testing process – the one where he will lay still as death for hours on a table while they scan his entire body.

It all starts with the month of February – on the very first. 

It’s possible that all of this is a simple sign of hyperthyroidism.

It’s possible that this is just the life and times of a broken body that has endured almost a decade of treatments. 

And it’s also possible that those opposite numbers are a sign that the small pieces of cancer, crouched tight in the lymph nodes where his thyroid used to be… well, it’s possible they noticed that we opened the door a little and have decided to grow into the space we created and intended for his body to thrive. And if that’s possible, the doctors know they need to check his lungs too.  

I am worried. But I’m also not worried, if that makes any sense at all. Sometimes faith is an even bigger conundrum than the life of our fighter boy. It’s a heart space where both grief and peace live in equal measure. And they can coexist because cancer will never stop being wrong, but Chase will never stop belonging to Jesus.

Whether the results of these tests come to nothing, or something, or whether (as we have since the Fall) we are left with no answers and the command to keep watching and waiting, we do so with hope.

These are heartbreaking moments, yes. But they’re heartbreaking moments that are part of a much bigger, better story that that HE is writing. And I don’t know how many more awful chapters there will yet be, but I know the ending is good and perfect – forever. 

Choosing thankfulness. Moment by moment. 

Incredibly, this surreal 2020 year is down to being measured in hours and minutes. This was a year of turning inward and seeing to ourselves in a strange season – even as we grieved with our community and world in unprecedented days. And yet, we did still laugh – a lot. As the kids age, less gets written down, not because it isn’t funny, but usually because it isn’t appropriate. [see also #LifeWithBoys 🙂 ]

On a mental, emotional, and physical level, this year has been very difficult and all along, we have prayed for the strength to choose joy. You’ve spent the year crying with us, so now, I invite you to laugh – even for a moment. And to that end, I’ve compiled a few status updates from my social media pages.

I chronicle these things (and have done so for many years now) because life is too short and childhood is even shorter and there are too many parenting moments when you’re faced with the choice of either laughing or melting into a puddle of tears. …and that’s all without even touching illness, hospital days and the simple act of processing it all…let alone a global pandemic and quarantine. So, as much as possible, despite the changes… we choose joy. And we choose to laugh. 

**Many of the scenarios include personal hashtags: from the most common – #LifeWithBoys, to the most sarcastic [playing off our secret parenting fears] #NotScholarshipMaterial, as well as special guest appearance by legendary grandfather, Ed Poole.**

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Sometimes, things go neatly, nicely, and exactly as planned, and sometimes, Chase finds the scotch tape. #LifeWithBoys

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The one explanation I’m never truly prepared to deal with…: “BUT DAD STARTED IT!”

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My special child just told me what I was going to say to him and then informed me that he “just took your mouth right out of the words”. Parenting Chase is the best.

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“How To Get Grounded Really Fast”, a brief drama in one act…
Mom: “Aidan, it’s time for bed…”
Aidan: “That’s so oppressive. Are we in a dictatorship? We need a democracy! Bed… ha!”
[Aidan takes one look at his mother’s face and starts running]
The End.

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You know it’s not great when the answer to “What happened here?!” is “Well, I sort of picked him up, but then I might have accidentally dropped him…” #LifeWithBoys

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“But why can’t we play hide and seek in the garage? We won’t use the drills or the hammer…!” #LifeWithBoys

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Good morning to everyone except Chase, who – upon waking at the crack of dawn – promptly discovered a referee’s whistle.

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“I AM A VERY PATIENT PERSON! I only get IMPATIENT when you make me WAIT!” #LifeWithChase

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“You are one hundred percent NOT going into the light. Now get up off the floor right now and eat your breakfast.” #LifeWithBoys

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“I just love you so much, but Mom, I’m gonna leave you now because, well, you really need your beauty sleep.” #PointsForHonesty

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“I’m not saying that you’re a bad cook… But, I mean, come on… it’s not really five stars around here.” – child most likely to NOT see his next birthday

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Quarantine, day 6,832…
The boys have invented a game called “Box”.
In this game, one boy upends a large packing box, covering two-thirds of his body (including his vision, of course), and the other two boys kick and punch the “Box” until it/he falls over into the grass.
If you need me, I’ll be preparing for a highly probable ER run… #NotScholarshipMaterial

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How to get grounded; the scientific approach:
“Well, Mom, you said you’re going to keep an eye on me, but if it’s only one eye, then you should know that you’ll have very little depth perception which means…you might not be able to keep an eye on me at all.” #SchoolForTheGifted

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“Mom, you know me way too well to think I’m going to be careful.” – Karsten “Know Thyself” Ewoldt, age 8 and holding #SelfAwareness

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Chase rage-deleted every app on his iPad and Karsten is weeping on the floor because his journal entry on perseverance is -wait for it- “too hard“.
Strongly considering just cancelling the rest of Tuesday. #LifeInQuarantine

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“Well, I’m mostly done with math…partially done…sort of…I mean, I wrote my name at the top of the paper and that’s something, right?” -Chronicles of a Public Home School

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“No! I don’t have to answer that question! Because unlike you, I already graduated from second grade!” – Chronicles of a Public Home School #ParentingFTW

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Always wear clothes on video calls with your teachers. That is all. -Chronicles of a Public Home School

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“Ladies, ladies, you’re all very pretty, so no need to fight about it.” -Darcy to her fighting brothers #IQuit

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“You want me to actually go into the boys’ bedroom?”
[tosses head]
“Tell my story. Make it good.” #TeenGirlSquad #Drama

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Me: “What have you done to help the household today?”
Child: “I walked the dog!”
Me: “Oh, good. Thanks.”
Me: …
Me: “We don’t have a dog.”
Child: “THAT IS BESIDE THE POINT!” #QuarantinedForLife

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Me: “Where is the only place you should put stickers?”
Child: “Not on the wall, that’s for sure.” #LifeWithBoys #QuarantinedForLife

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Chase: “I do not know who took Darcy’s last pack of polaroids and used them all up, but it probably was not me.”
Also Chase: … #SmoothCriminal

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“I was in labor with you for three whole days, so I think you can manage second grade!” #MotherOfTheYear

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Child: “Do we have duct tape …and a screwdriver, oh, and also a hammer?”
Me: “What do you need them for?”
Child: “Um…probably nothing.” #LifeWithBoys

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“I’m pretty much fluent now.”
“But are you?”
“Totally.” [speaks a phrase in Spanish]
“So, your brother is your uncle and also a giant chicken?”
“Exactly. Fluent, see?” #NoMaterialEscolar #TeenGirlSquad

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Goodnight and goodbye, dear 2020 …I’d love to say we’ll miss you, but we probably won’t.

Moment by moment. 

“The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.”

Psalm 16:6

We did not ask for this year.

And yet…

I cannot resent it being given to us either. Life is a struggle, but these things have been destined for our good – to give us a future and a hope. And it is that hope to which I cling as we’ve moved through tears and heartache in a broken world – often far too alone this year, especially. It is the hope that there is goodness and joy to be had despite it all because of the love of a good, good Father.

We are overwhelmed, yet God is faithful.

We are tired, yet God never sleeps.

We grieve, yet God gives hope in the pain.

And isn’t this why we mark this Christmas-time, life-long celebration? The moment that tiny babe drew breath in a barn cave with the animals all those thousands of years ago, the war was won. Hope will always win because God’s love is greater still. 

Choosing hope for us all, with great thankfulness – now, and in the new year to come.

Moment by moment.

Love,

The Ewoldt Family

Today, Saturday, December 12th at 3:20PM, our darling boy turns eleven years old. And what a year this one has been, right?

We are still in awe. This boy is in double digits in his singular, astounding and miraculous life. What a blessing!

And even as we continue to wait for next scans and answers and medical stability of some kind – even as we turn the page on one of the most extraordinary years of his life, we are so thankful and blessed. And there’s something we’d like to tell you about in regards to all these blessings, because I think you might be able to come alongside us for this part now…

Over these last years, in the middle of this second diagnosis with its relapse, growth, and treatment, and endless waiting, there have been many individuals and organizations who have walked beside us in so many unique ways, but on this, Chase’s eleventh birthday, we’d like to share a very special ‘bearer of burdens’ with you: the Anthony Rizzo Family Foundation.

Many of you will know the name ‘Anthony Rizzo’ from his place as the Chicago Cubs first baseman, but did you also know that Anthony was once in a hospital, being treated for cancer when he wasn’t that much older than Chase is now?

Anthony believes that an individual does not battle cancer alone, but that the whole family battles it together. The Mission of the Anthony Rizzo Family Foundation is to raise money for cancer research and to provide support to children and their families battling the disease. The Foundation is run entirely by Anthony’s family, his close friends and his management team with Anthony providing oversight and leadership. All of us at the Anthony Rizzo Family Foundation believe that every family deserves a fighting chance.

Anthony Rizzo Family Foundation mission statement

Our family has not only been recipients of the foundation’s generosity, but have watched so many others’ be assisted as well – from helping fund medical bills to shipping PPE during quarantine to funding grants endowing child life specialists on the oncology floors (ensuring every child has the resources they need) to simply walking among the families and saying “What do you need today? How can we help you right now?” Again and again, we have had the honor of watching this foundation step into the gap with so many families and so it’s with great joy that I encourage you – for Chase‘s sake – to be a part of this work.

In honor of Chase’s 11th birthday, would you consider giving to the Rizzo team? $11 for 11 years – or more! Every little bit helps.

Chase’s eleven years on this earth have been marked by the most incredible love and I’m so excited that – together – we can shower that same love on other families through the Anthony Rizzo Family Foundation!

Click HERE to donate.

Thank you for sharing in Chase’s birthday joy with us!

So far, there have been 5,785,441.2 moments (the exact amount of minutes in eleven years), and by the grace of God, we will continue…

Moment by moment.