The Problem of Young Bones

Every day is a little better. There have been no hallucinations in five days. But sometimes, he still slurs his words and sometimes too, when we speak to him, Chase looks at us like we are speaking a different language – like he doesn’t understand – but only sometimes.

So early, early tomorrow morning, we turn to the next thing: some surgery.

A few years ago, Chase’s bones showed signs of locking into place for good – everything his body has been through led his brain to believe that perhaps he was old enough; tall enough.

So at the time, he went through a surgery to place an implant in his arm – the goal of which was to help control puberty and growth – because, you see, too many children with brain tumors loose their endocrine system regulation in the fight.

Anyway, the implant that has been so helpful to him is now in danger of hurting him. His bones are too young now for his body (you can’t make this stuff up), so the implant that served him so well needs to be removed. … tomorrow morning.

If all goes to plan, this will be Chase’s last day in the hospital for a little while, and how we are ready for a rest!

But also, we would so appreciate prayer for the day because, no matter how small, a surgery is still a surgery… and Chase is still Chase.

Moment by moment.

Let your unfailing love surround us, Lord, for our hope is in you alone

Psalm 33:22 (NLT)

**May is Brain Tumor Awareness Month #GoGrayInMay**

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!

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

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