Cancer – CHASE AWAY CANCER

Of Rough Seasons, Red Flags, and Defiant Thankfulness

It’s been twenty-four days since I got on the ambulance with Chase.

At the time Chase was first unresponsive and then tested in the ER, the radiology report indicated there might have been signs of micro-hemorrhage in one of the growths (cavernous malformations; cavernomas) in his brain. However, upon further review with all the teams downtown – who have access to almost fourteen years of scans and pictures – there is not enough of a change to positively declare a micro-hemorrhage. It turns out that the brain just looks a little rough around the edges when it’s been cut open and radiated and all sorts of life-saving measures in real time.

And oh, in that moment when the calls came and the verdicts were handed down. I was so upset. I shocked myself, actually. And in the stillness and frustration, I had to confront the truth that I think I actually wanted it to be a micro-hemorrhage just because it was a crystal clear answer and those are horribly few and far between when it comes to Chase Ewoldt.

Isn’t that crazy? Sometimes horrible things don’t feel so very horrible just because they come with some level of clarity. And conversely, a lack of clarity is it’s own fearful place, isn’t it? I’m so thankful God sits with us in those spaces, dear ones.

What was far more worrisome to Chase’s regular teams was that Chase very clearly had a small season of confusion after he woke up. He was almost nonverbal, but he knew where he was and recognized who I was. However, that night, when Bob came to pick us up from the hospital, Chase was telling him how nice it was to see him finally on this long day… as if he had not seen Bob (talked to Bob, even) on his way into the ambulance within minutes of waking.

This is something of a red flag to everyone as this tends to be a classic hallmark of what happens after a seizure. Only we didn’t see Chase have any seizure activity. In fact, the nurses pulled back his sleeping eye lids and his pupils responded normally to the light.

But there is another kind of seizure… one that is not really absent, present, or convulsive. In fact, from the little bit I understand, it happens in a napping moment and then the patient remains unconscious to the world while the brain recovers, looking for all the world like they are asleep. But they cannot be roused. Sounds heartbreakingly familiar, right?

Perhaps at this point, you’re wondering why I am I sharing this with you while we still have no answers. Because this not knowing is Chase’s life, dear ones. And you’re always welcome on the journey…

Right now, we are staying in very close contact with his neurology team. And due to the high demand for pediatric care, we are on a waiting list to get a season of monitoring moved from May until now. During that time (whenever it comes), Chase will be admitted to the hospital and monitored for seizure activity for at least twenty-four hours with the hope (as always) for answers and clear next steps.

So we are waiting. We are waiting for the neurology piece… and for several other pieces too because Chase has had a long and rough several weeks. What we do know right now is that there will be more things unfolding… most notably, following a long conversation on Friday afternoon, it was determined that Chase’s heart needs his body to be back in cardiac rehab.

Over the last twenty-four days, the feelings of human brokenness and the fragility of Chase’s life have felt increasingly more overwhelming. So I’m sharing here some words that I wrote out for the women at the retreat last weekend. I’m holding them close…and maybe you need them too?

“I know, at least for my own part, that I most want to beg God during a season when I least feel like thanking him. But this particular practice of thanksgiving throws wide the doors on our stress and our sadness because even in our darkest moments, this verse [Philippians 4:6], this command is a reminder that we still have things for which to be thankful.
This isn’t an arbitrary benchmark . It also isn’t God looking at us and saying, “I’ll give you this if you give me that” like some tit-for-tat argument. God isn’t a parent teaching an errant toddler to say please and thank you.
Rather, I believe that this is a call to faithfully rehearse His goodness even as we fall apart in our present anxieties. This is us crying out: “God I can’t… please help… because I remember what you did before”.
This isn’t a “Just say please!”, this is: “When you can’t see straight, don’t forget what I’ve done!” And when we speak our thanks, when we recall what God has done (even at times, out loud), we are essentially reminding ourselves. …and we need this.”

This is where I sit right now: “God, I can’t, please help!” And even exhausted and with tears running down my face, I know there will be good – because He is good – even if I can’t see it all coming together right now. So by His grace, we will remain defiantly thankful even with no answers…

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?)

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.

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.]