Cancer – CHASE AWAY CANCER

Of Fourteen Years and A Better Country

A handful of weeks ago, as the last July sun rose on the horizon, Chase passed his fourteenth cancer anniversary marker. It’s been fourteen years since Darcy woke us up right before the dawn complaining that Chase was moving in his bed and wouldn’t stop. Fourteen years since the first seizure, the first ambulance, the first terrifying description: “there’s a large mass”, and everything we ever knew changed forever.

We were initially given a less than twenty percent chance of Chase surviving his cancer. Did you know? I remember that his doctors hoped to give us six months because the goal was to get him to his third birthday. They wanted to at least let him turn three… and that was fourteen years ago now.

In those early days, we slowly said goodbye to the life we had and the Chase we had known (though we didn’t realize it at the time)… the one with the hair on his head, with his unscarred body and un-slurred speech. The one with the perfect hearing and eyesight, and plans to grow as tall as his dad. The Chase we thought we’d know and grow looks different now. Everything changed with the cancer.

But that’s not the end of the story…

Recently, we were in the car with our fuzzy-headed boy and as often happens with any time on a car ride, Chase talked about whatever happens to come into his mind.

On this particular occasion, he talked about his friends Wesley and Connor and many others that he has known through the lens of the hospital. And then suddenly, he was talking about his own journey.

During the somewhat rambling course that his words took, he said that cancer has “changed him for the good”.

At this point, I looked over at Bob… What did he say?

It is not an unusual thing for Chase to stumble over or confuse his words, but this felt too big and strange a slip, so I actually stopped him and asked him to clarify. In that moment, I actually told him what I thought he meant to say. “You mean it’s changed you for the bad? The cancer? I think you confused the words, Chase.”

Then he told me that no, he meant what he had said. And then he clarified his statement with these words …

“I think the tumor changed my life for the good. It changed a lot of things like how I prove myself, how I give advice, how I talk to people in the world. I can give people courage and confidence. I wish it didn’t happen. But I won’t say that. Because it makes me feel bad about life. I don’t want to feel bad about it. I pray that my faith stays strong.”

How can my son sit there, broken and weary after being profoundly, forever altered by his disease and say “good”? How is he capable of making the decision not to dwell on this very real damage? …the same damage that overwhelms my own heart in many moments. Just… how?

We, the ones who witness his fight, know it is not good. In fact, cancer feels like the very and fiery opposite of good. And yet Chase said what he said.

I think I could sit with his words forever and not get over them, dear ones. That’s why I opened the note app on my phone even as he was still talking and started typing as quickly as I could! The words seem crazy…! And yet they ring clear and concise – especially when I consider that the last words he decided to speak on the subject were:“I pray my faith stays strong.” [he was actually quoting a piece of a Danny Gokey song he loves]

I believe Chase could ultimately say the word “good” in this context with complete neurological clarity because he wasn’t focused on his pain. His eyes weren’t down, looking at the reality of where his feet were planted on this earth and mess. Rather, he was looking ahead. He was focused on that place that the book of Hebrews calls “a better country” – the final, best, and promised place where we will finally understand how our pain wasn’t wasted. The place where we will come to see the good and know as we are fully known.

To be clear, Chase knows the reality of cancer. And as he said – if he thinks about it he starts to feel bad. I have witnessed his tears and his questioning more times than I can count.

I believe Chase was, with his words, practicing what it looks like to live with hope. His good…his very joy…wasn’t spoken in regards to his outcome but rather, in his own worshipful witness of Spirit-enabled profitability in the chronic wreck of a post-cancer life.

This is the goodness of God in Chase. Fourteen years down the road…

Moment by moment.

“Why did [the people] stay in tents in a place where they owned nothing? Because they desired a better country. They realized that that was not the whole plan. The whole plan was wider and deeper and broader than just the land. So they put up with temporal discomfort, believing that this temporal discomfort is leading to an enteral weight of glory. … We press on with faith and we endure with hope. The hope is taking the future reality of God, the future promises of God and believing them to be so true that you live your life today by them.” Dr. Steve Leston, on Hebrews 11

Of Papers, Chest Pain and Being Okay: a moment for the new school year

I have come to realize that I don’t post very often in the month of August and it’s because it’s the month that comes with a return to school and all the pieces involved for a child like Chase.

Last year, Chase missed a significant part of his sophomore year. This year, he’s hoping for better and more, but he’s afraid too.

Every day it is a challenge to help him wrap his mind around his symptoms and try to figure out what needs to be reported and monitored, and what can be ignored. [easier said than done, for sure]

And me? I’m filling out all the papers and sending emails and working with his hospital and this most incredible support network just to get Chase in the school building and allow him to be there all day.

This last week, I was at the school almost every day (forms, medicines, low blood pressure intervention, etc)… BUT …so was Chase. [winning!]

The intersection of a medically complicated life and a typical school day is an interesting space to inhabit.

Of Hot Chocolate, Thankfulness, and Impossible Things

It was quiet in the sunlit lobby.

Quiet enough to possibly nod off after the long night of sleep testing.

Instead, I reach for the large black coffee close to hand, trying not to think about the painful cannula stuck in Chase’s nose and taped to his face all night. Too many pieces surrounded him to really sleep, I think.

We made it through the overnight. So, four more appointments and eleven more hours and then we could finally go home.

Sometimes when the hospital isn’t around the corner from your house, it’s easier to “stack” appointments and just stay downtown. Easier… ha, I think as I sip the coffee.

There’s still almost an hour until cardiac rehab. I remember the tech rubbing at the electrodes on Chase’s head last night, trying to get them lined up just right. I hadn’t told him about the red marks and even a small open sore on the back of his head this morning as I’d cleaned electrode goo out of his fuzzy hair. If he knew anything had left a mark, it would bother him even more and we just needed to get through the next thing. Today came with a cardio-pulmonary assessment and evaluation of his stamina too.

Idly, I wondered what the sleep study would find… if there might be embedded bed answers for the times sixteen hours creep by while he sleeps like the dead.

Chase reached for his phone and pulled up the Bible verse for the day, sending it to me and several other contacts in his phone – something he loves to do often. My own phone vibrated on the table with his text:

“But Jesus looked at them and said, ‘With man this is impossible, but with God all things are possible. Matthew 19:26”

Of all the days and all the verses…

I remember this verse claimed for the brain tumor baby down the hall from Chase’s treatment room when we started this journey; the baby who wasn’t supposed to live (and is actually going to start high school in the fall). And then I think of the friend in Israel on the other side of the world holding this verse close right now as she waits to see if treatment worked for her son.

Brain cancer is everywhere.

I sip my coffee with a heavy heart, thinking about all the appointments still ahead and the stupid and frustrating necessity stemming from Chase’s own brain cancer experience. It’s heavy. I feel heavy with it.

“Mom, today, I’m thankful for Dad,” he says with a smirky smile.

He says it to be silly since I’m the one who did the sleepless night with him. But he’s not wrong. His dad is not only a lovely soul, but his thankfulness hits like a balm and I remember the words of an old friend, the only greeting he ever gave. No hello, just “what are you thankful for today?” It was a greeting, but also a challenge.

Can I be thankful in the heaviness? And I realized I was actually thankful that the sleep study room had a Murphy bed instead of a chair for me. The night could have been so much more awake and horrible. Also? The sun was shining. That was kind of nice.

“Can we visit Wesley?” Chase broke into my thoughts.

After cardiac rehab, before we met the rheumatology team, we walked over to the inpatient rehab facility to see Wesley and while we watched, he nodded his head on his own – perfect and controlled. The massive spinal stroke that tried to destroy his body shouldn’t allow for that movement, but he did it anyway. I felt so thankful again and Chase watched quietly before making a comment about the Tennessee Titans flag hanging in Wesley’s window. Even spinal stroke victories doesn’t exempt a person from Chase’s football thoughts.

By the rheumatology meeting, Chase was horizontal, talking to the nurses and doctors from a prone position, wrapped in his fuzzy Bears blanket against the chill of the exam room.

When they examine all systems head-to-toe, there are a lot of questions. Most of the time, he’d turn to me and say “What are they asking?” as if I was his interpreter for a foreign language. And maybe I was, bless his exhausted brain.

“Did you know Michael Jordan owns a Nascar racing team?” Chase asked them. All the talk about his symptoms were boring in the face of his favorite number twenty car coming in second this past weekend downstate. He loves cars and going fast and wishes he could learn to drive a car some day.

The rheumatology team (who did not know about Michael Jordan and his race cars) was stumped by Chase, but wanted lots of labs to check. Labs and needles are his official last straw and so I call Bob in-between his meetings at work: “Can you call our son? He’s closed himself in the men’s bathroom and I really don’t want to have to go in after him.”

He’s done. Officially.

And who could blame him?

But it’s awkward because he can’t be done yet.

I want to weep for him.

Seven missed calls and he finally comes out.

“You owe me.” He mouths the words as the needle glides in smoothly on the first stick to the back of his hand. Usually his veins love to roll and collapse, having him bruised and his phlebotomists frustrated.

A first stick is a small but precious mercy in the long day.

He wants a hot chocolate… but not until after the last appointment of the day like a celebration of survival. I can do that for him.

We get in the car. The last appointment is at an outpatient facility about an hour away. It’s quiet for a moment and I wonder if he’s still overwhelmed and upset, but then from the back seat, the words come: “Mom, I was stronger than I thought I was.”

“He’s one of the only children I’ve treated who physically presents as a different child every time I treat him.” The physical therapist says as she stretches tight muscles in his legs a couple hours later. She goes on to explain that some days he’s strong and limber, and other days, he’s weak and too tight – like today. I laugh at her words and she looked like maybe I didn’t take her seriously, but I was laughing in relief. I felt weirdly seen by her observation. Chase is a rollercoaster and his body is so different from day to day. It’s always nice when someone else sees it too.

And then it’s time for hot chocolate and home and I think back to his words in the parking garage: “I was stronger than I thought I was.” And I think about the truth embedded there: “In the Spirit is the enabling,” said Elisabeth Elliot. I think God himself sits in the space between “I can’t do this” and “I did just do this” and it’s precious and personal.

Now, almost forty-eight hours later, the labs are starting to populate the online chart. They’re all over the place and I don’t know what they mean yet. Several of them are flagged as being outside normal limits. Who here is not surprised Chase sits outside the normal?

Maybe we’ll get some answers.

Maybe there will be more tests.

And maybe these hard things aren’t a helpful diagnosis with clear and clean steps in waiting but simply the real, true results of horribly hard brain cancer treatments at a too young age.

All of this has yet to be determined.

But Chase was stronger than he thought he was on a hard day.

Wesley nodded his head.

The girl we met in the elevator had a good brain tumor scan.

The hot chocolate was delicious.

And with God, all things are possible – even exhausted, broken-hearted thanks.

Sitting in the wait…

Moment by moment.

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.]