cancer – Page 2 – CHASE AWAY CANCER

Of Boys, Bugs, And The Week of a Hundred Days

Dear Ones,

In truth, I’m still trying to find the words to put this last week together in my own heart and mind, so this may feel disjointed, but hey, you’re on this adventure with us, right? (and we are so thankful for you)

As I last wrote, Chase had his 33rd MRI on Monday morning and we were scheduled to talk to his teams on Wednesday morning to discuss results… that’s when things really got interesting.

My alarm went off before the sun on Wednesday morning, the house was quiet, and I wasn’t looking forward to trying to wake an almost assuredly crabby Chase. So you can imagine my surprise when I opened the bedroom door to find a fully dressed Chase with his backpack over one shoulder. “We’ve got to go, Mom.” He was ready to go to the hospital because he hadn’t slept well at all. In fact, he went on to tell me that he hadn’t slept since around 1:30AM when he got up to get dressed, pack his bag for the hospital, and even take his morning medicines. That’s a lot of Chase to take in before coffee.

And then, before I could get to the coffee maker, he proceeded to vent. He was very upset because I’d let all the bugs in the house – the reason he couldn’t sleep. He grabbed my arm as I reached for the faucet on the kitchen sink lest the bug on the window ledge bite me. Dear ones, there was no bug on the window ledge. There were no bugs in the house at all.

Within thirty seconds, it was apparent that Chase was in the grip of some kind of simple, but profound hallucination that there were bugs surrounding him.

Within thirty minutes, it was apparent that his speech was being affected as he slurred his sentences out of order, the worst part of which was that he knew the words weren’t coming out quite right, leaving him frustrated and growling, all while he swiped at bugs that only he could see.

Within an hour, it was apparent that his short term memory was involved and even now, he has little to no memory of those early hours of Wednesday.

At this point, I had no idea if he was having some kind of seizure, stroke, or drug interaction. My only concern was keeping him safe and at peace. [note: Chase has just recently had his vision checked, so we could confirm early on that what he was seeing wasn’t anything in his actual eyes]

While the most acute symptoms of the hallucination were gone within those first few hours as we met with doctors and made calls and plans, Chase has continued to be tired and dizzy with somewhat unclear speech and occasional bugs in his vision, so Wednesday’s routine appointments grew longer and starting including more tests. Because he was stable, we were able to bring him home, but were cautioned to take him directly to our emergency room if anything changed.

Since those initial hours, he seems to get better every hour and every day, but his symptoms just didn’t go away and because of this, the last seventy-hours have been full of communications and tests, including finally putting Chase back into the MRI machine (number 34) early on Friday morning to rule out a sudden brain bleed.

We are so thankful to report that there is no bleed and absolutely zero changes from the Monday scan to Friday’s check. But we are especially thankful for that extra vigilance as Chase will be back under anesthesia later this week for a minor surgery.

Over the course of the week, all the teams have done such an amazing job, checking the levels of his various medications in his system, checking his chemistries and thyroid levels, his common blood counts, and even talking to the anesthesia team to see if anything unusual or different was used in last Monday’s procedure that might have caused what we’ve seen unfold this week.

And everything … everything checked out.

It is a relief to know what isn’t happening, and it’s a relief that he continues to improve every day. There is also the chance that it all comes down to that morning dose of medicine he took in the middle of Tuesday night (ie: so few hours after his evening dose) but Dear Ones, I genuinely believe that we might never know exactly what happened or why. This might just be one of the strange and difficult, scary, but not serious, aspects of long term cancer survival. And that realization is heartbreaking even as I shake my head and give a rueful smile around the words “Well, it’s Chase…”

That boy. He likes to keep it interesting.

Perhaps we will know more tomorrow as he goes back to the hospital for a routine meeting with his oncology team. And perhaps we will know more farther along the way. But whatever and however we know or never find out, we will choose hope and press on. And I’m really glad that last week is over now.

Moment by moment.

[On Monday, April 24th, a day that feels one hundred days ago, Chase had a full brain and spine MRI and the results are in: the benign tumors (cavernomas, cavernous malformations) that sit in his brain grew larger, but are still not large enough to require surgical intervention – and it’s worth noting that further testing this long week showed these tumors (despite their growth) were not part of Chase’s difficulties. Small mercies. We are discouraged by the news of growth, but thankful for the stability too. No cancer was discovered anywhere in his brain or spine and the growth in his kidney remains stable.]

Number 33

Early tomorrow (Monday) Chase will be undergoing (what I believe will be) his 33rd MRI.

Because of the duration and requirements of this test, Chase will be sedated and at the hospital for much of the day. The ability to sedate is a precious mercy for his overstimulated brain and we are thankful.

While Chase sleeps, the medical imaging and radiology teams will analyze every aspect of his whole brain and spine before they send it out to his neurosurgery and neuro-oncology teams. Almost eleven years of unceasing vigilance… such is brain cancer, as many of you know too well.

We are so thankful for all the amazing teams who surround our fighter, and we’d also very much appreciate prayer for his body and heart as he goes under once again.

On Monday evening, he will come home and rest and then we go back to the hospital on Wednesday to meet with the Neurosurgery team and talk results.

Choosing hope.

Moment by moment.

*Chase in the hospital Sky Garden area, March, 2023*

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!

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

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.

Tag: cancer