Author: Ellie

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!

Of Special Things…

Dear Ones,

After completing more tests and meeting with a cardiology team, we learned today that Chase’s heart function is decreasing. 

At this time, it’s unclear how quickly this decrease is occurring, but today confirmed that the ejection fraction of the left ventricle is noticeably lower than his last (and normal) echocardiogram done a little over a year ago.

After a lot of serious and big words, we asked outright if Chase was in heart failure, and found the answer encouraging to our own hurting hearts:The actual failing comes when the heart can no longer support the proper function of the body, and right now, despite its decreased function, Chase’s heart is still supporting his body. Holding on to this very, very closely tonight.

Right now, Chase is wearing a heart monitor and more tests and labs were done today. Over the next weeks, there will be still more tests and meetings, and we will do all of this again in two months to try and get a better picture of how all of this is unfolding. 

As we struggle to process something that is both awful and not surprising, we are so thankful that heart failure is in no way imminent at this moment…and yet we are deeply grieved that his heart is struggling at all. 

On the way home, I was trying to explain the outcome of today’s meetings to Chase in a way he could understand – how this is serious, but for now, he’s also doing so well, and he asked me “Why didn’t you just let me die of the cancer, Mom? Why did you let me have all the treatments if they were just going to hurt my heart?” … and while I took a moment to catch my breath and pick up the pieces (he packs a punch with his questions some days, our Chase boy…), he interrupted the silence before I could speak with this: “Was it because God had a good plan for me? …because I had to do special things?” …and then, more strong, more convinced: “I have special things to do in this life.”

I couldn’t have said it better myself, sweet boy. 

Moment by moment. 

 For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

Jeremiah 29:11 NLT

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]

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