Tag: moment by moment

Trusting The Process

“What do you want to be when you grow up?“

The interview question came quick and benign, probably one of the most common questions to ask a child, and yet Chase, propped on a stool in front of cameras and lights, stared at Robbie with a blank look on his face.

The principal stood in his blue suit in the center of the gym with all its sounds and smells, welcoming the room and I watched him over the top of the fuzzy head sitting next to me. High school.

There was a table set up and stocked high in merchandise branded with the school logo and colors and Chase reached for a shirt that said “Class of 2028” – “Can I get this one, mom? I’ll be alive in 2028.”

In the last several days, there have been an unusual number of moments to look forward. This facing high school and growing up… it is such a gift. Too many of Chase’s friends did not have this privilege. But it is a strange thing to walk hand-in-hand with the kind of diagnoses Chase has and to think forward – beyond simply the next moment.

There is a strange (though by no means bad) tension in this space. All we have is today, and yet we walk about with plans for the next year, the next decade… and further still. It’s a blessing and burden in equal measure because time is a gift, but we are not promised more of it.

I walked through the halls of the high school last night, seeing decades of trophies and black and white pictures, all standing witness to a length of time. And I heard Robbie’s question again:

“What do you want to be when you grow up?”

And then I heard the oncologist’s voice in my head… that first meeting on a hot, August day:

“Let’s just see if we can get him to age three.”

What a place to be…

Trusting the process…. Moment by moment.

[picture: Chase is pictured here with a beloved music teacher who – though he does not want to sing in school – he is trying to convince to teach other subjects so that he can be in her class. One of her most used phrases is to “trust the process” and I’m co-opting it here as we look forward with fear and wonder in equal measure]

Note: Dear ones, I needed to write through the strange tension of this place we find ourselves, but in all seriousness, I’d greatly appreciate prayers for Chase. This is a big step. These are the years when children truly lean into impending adulthood and we, none of us, know exactly how much of that adulthood Chase is capable of. I suppose what I’m trying to gently say is that the physical and neurological differences between him and his peers will most likely go from noticeable to insurmountable in many ways. I know it will be good. But it will also be hard. MbM.]

Roll With It…

On this Thursday, also known as “Star Wars Day”, Chase was in and out of surgery in a relatively short time as hospital days go, and we were able to bring him home.

We love the surgeon who worked with him today – not only is she an amazing doctor and advocate, but she’s worked with Chase before – sometimes even in very difficult moments. Before Chase went back, I sat with the surgeon and she explained things about the possibility for multiple incisions or cutting into muscle, but in the end, this boy (who does so much the hard way) had a blessed moment of ease: the implant was in one piece, so he only needed one incision and the rest of the area, both inside and out, was left virtually intact. (less stitches are always lovely, right?)

Matching Band-Aids in post-op

And then they wheeled him back, and he was afraid, but peaceful too. They stopped at the white doors that mark the line between parents and staff and I kissed his fuzzy head and told him I loved him so much. And as he passed through the doors – like he’s done too many times before – I cried.

I cried because the moment of separation – that knowledge he would be facing a cold operating table and a scalpel and I wouldn’t be there to hold him – never gets easier. But I also cried because these last two weeks have felt like the outside of enough and I was just so, so relieved that this was (hopefully) the last appointment for a little while. But regardless of what comes next, like Chase said when post-op didn’t include goldfish crackers: “It’s okay. We’ll just roll with it.”

Grandpa watches Chase sleep off the anesthesia

Thank you for rolling with us.

Moment by moment.

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.]

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]

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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