Category: Uncategorized

Of Hearts And Things We Can’t Yet Fathom…

Hello, and Happy 2023 to you! The last weeks have been full of family, extra snuggles, and rest …

As some of you may already know from previous posts or social media, Chase had a liver and heart MRI last Wednesday, January 18th in order to monitor an iron load in his body. It was quite a process that required hours, anesthesia, and a dedicated cardiology/anesthesia team monitoring his unconscious, intubated body.

You see, once upon a time, the children with Chase’s cancer never lived. And even now, too many still die. But there are now enough that live, and live long enough, that – for the first time – medical teams are able to track some of the long term effects of saving their lives – one of which is an iron overload from blood transfusions.

This is what sent Chase into the MRI: during the worst days of his initial brain tumor treatments, he was so sick, so weak, that many times, the only thing that kept him going were bags of full red blood. I wish you could all have seen how he would go from sunken gray to pink, how he would feel energy again, sometimes for the first time in days! And yet, all that lovely, life-giving blood came with a price: iron. Too much iron for his body to metabolize long term. And so they have watched organs like his liver for a couple years now, watching the damage unfold. But in the last few months, it became increasingly clear to Neuro-oncology and cardiology that it was time to ensure the safety of his heart.

The MRI results came in on Thursday evening as we were stuck in traffic, in the rain, on the way back from day two of hospital appointments.

First and foremost, Chase’s body is holding out well and steady against the iron load, which is amazing. 

Second and more sobering, however, the MRI on Wednesday caught something about the left ventricle in Chase’s heart. I won’t say technical terms just yet because they’re big words and scary and they could mean many different things. 

Suffice to say that Chase will be adding a cardiology team to his ever amazing, every growing roster. 

It’s hard to say at this point whether this is a gentle precaution or a serious issue. But, one week to the day after he was in the MRI machine, he will be undergoing more heart tests and meeting his new cardiologist.

All of this feels a little difficult, very broken, and just plain crazy to think about. He started with brain cancer and now we’re looking at his heart? And yet… this is the reality, this is the chapter, this is where we are today. So, a reminder from our hurting hearts to yours:

God is putting together a story we can’t even fathom and it will be good. 

Moment by moment. 

Don’t Forget The Light…

So…

I told you all about the $10,000 that got raised in just those few hours, but dear ones, the next day, I picked up my phone and saw a notification that made me drop it again…

A single donation over $2,000 to push the total over and above $13,000!

Ordinarily, I wouldn’t single out a donor (and knowing the donor, that’s not at all why they did it, or what they’d want from me). Bob and I get the honor of seeing the back side of the Go Fund Me page. We see the dollars and the names and the sacrifices and surprises and it’s so, so humbling like you wouldn’t believe.

But … I want to write about this single donation, the push that got to $13,000, dear ones, because this can be a dark, dark season for many. We don’t have to go far outside our own doors (or do more than turn on the TV or bring up an app on our phones) to be inundated with grief and injustice and lack on epic levels, in massive and chaotic numbers.

And yet…

Quietly, silently, somebody pushed the $10,000 plus into $13,000 to match the 13 years of a boy that – by rights – shouldn’t be alive right now. And quietly, silently, people all over are doing similar things every minute of every day – Light-bringers – celebrating and creating big and small miracles every minute of every day.

So, you might not see it in the news, on your phone, or even as you walk down your street… but THERE IS STILL GOOD TO BE HAD.

THERE WILL ALWAYS BE HOPE.

And now, as we approach the longest night of the year, the darkest, coldest season: please don’t forget:

There is so much more light than we can see.

Moment by moment.

Yet I am confident I will see the Lord’s goodness while I am here in the land of the living.

Psalm 27:13 (NLT)
[photo: Margaret Henry]

THANK YOU

Dear ones, as Chase lay asleep last night, just short of the ten o’clock hour, we quietly crossed over the $10,000 mark. In less than 24 hours, no, in barely half that time, the Chase Away Cancer community and friends gathered OVER $10,000 for Lurie Children’s Hospital and the Anthony Rizzo Family Foundation in honor of Chase’s 13 years!

Did you hear that? Did you read it, because I want to say it again… in 2022, with inflation and illness and sadness all around us, you quietly and efficiently added thirteen to thirteen to thirteen over and over again until it was thousands and thousands!

He came to find me at my computer right before his dad tucked him in and wrapped in his gingerbread man pajamas, he leaned over the screen. “How did we do?”

“They did it, Chase. For you… Ten thousand dollars…”

And last year, he gasped and jumped up and down, but this year, his eyes got wide, a smile appeared on the edge of his lips, and then he bent his head to my shoulder with a long sigh of relief and a single word.

“Good.”

And isn’t that just the heart of it sometimes? We put our heads down, rest from the fight, take a deep breath, and sit with the good – even if only for a moment – because there is always good to be had, especially now, in the Advent of the Best.

And dear ones… this was a VERY GOOD THING that happened this Monday, the 12th of December. We rested for a moment and we hope and pray that these beautiful, amazing donations help others rest longer and easier farther along.

Looking forward with great hope, from the bottom of our hearts –

THANK YOU

Moment by moment

[photo: Margaret Henry]

13×13 – “$13 For 13 Years” – aka: Chase’s Birthday Fundraiser

[photo: Margaret Henry]

Monday, December, 12, 2022 –

By all rights and data, our precious Chase should have never seen a 3rd year, let alone a 13th birthday! Yet, here we are and Chase still lives and breathes joy (and sass) into our family and the world around him.

Once again this year, Chase asked that for his birthday fundraiser, all donations be equally divided between Ann & Robert H. Lurie Children’s Hospital of Chicago and the Anthony Rizzo Family Foundation.

And honestly, we can’t think of a more fitting plan! Lurie has brought Chase life more times than we can count, and the Rizzo Foundation has instilled so much hope – and Hope and Life go hand in hand in so many precious ways.

So after much discussion with our Lurie and Rizzo families, THIS PAGE was put together. All the funds will rest there, so we can see a grand total, and then when all is said and done, the Rizzo Family will write a check for half of the total, on Chase’s behalf, to Lurie Children’s – because of YOU, dear ones!

Would you consider making a donation? You can give $13 (or a multiple of 13…or more!) in honor of Chase’s 13 years. Every dollar counts – and it feels like it counts double this year – as the dollars will go to help a child like Chase and a family like ours – often in their most stressful, heartbreaking moments – both in the hospital with Lurie and around the country with ARFF.

With your help, we can contribute to research, resources and encouragement for so many children like Chase.

On behalf of the fighters and families supported by Lurie Children’s Hospital and the Anthony Rizzo Family Foundation…

THANK YOU.

**PLEASE feel FREE to share the fundraiser link far and wide!!**

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

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