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.

A Better Story: Of Surrender Without Defeat

LATE FALL

The phone call came late in the night.

On one end of the line, our anniversary trip (not far, but far enough) and on the other end, the oldest sister holding down the house and the boys and all the pieces. It was just for the night.

But what a night…

“Mom, he’s having chest pain. What do I do?”

Instant guilt. We never should have left. I take a deep breath and recall the words of the emergency room doctors and start to slowly explain what they told me about reproducible chest pain.

“If it hurts when you push on him, it’s more likely to be his bones and muscles, not the actual heart…”

We talk about the color of his skin, his lips, his toes. Over the phone, I teach her how to check.

There is so much we aren’t saying too.

“It will be okay,” I tell her. “Sleep now.”

“But Mom,” there is a moment of silence. “What if it gets worse and we sleep through it and don’t know…?”

I take another deep breath. There are so many unspoken fears in the question and it mirrors every fear I’ve ever felt since his diagnosis day. Because there are some things that time just doesn’t seem to dim.

What if it’s all beyond our control? What if he’s not okay and we just don’t know? What if I can’t stop something from happening?

I want to weep because I know the questions she might not even realize she’s asking.

What if this is the end of the story? What if we do it wrong?

It was a long night and Chase was stable in the morning. But the late night questions in the voice of the older sister still sit with me even now. “What if…?”

Walking with my children through suffering brings home time and again how very little we’re in control. How, particularly as they age in a house with unique special needs, there’s so very little we can do to protect them from the brokenness, and that, at the end of the day and the end of our rope, there is nothing left but to surrender.

How do we as parents teach a good surrender?

Not a surrender of hopeless defeat.

Never that.

But what if, like hundreds of souls throughout the Word and the world, it’s a surrender of hope-filled grace? What if there’s a way to show iron clad strength wrapped in the opening of tightly fisted hands?

It starts with acknowledging the Author, dear ones…

“Let it be with me just as you say.” [Luke 1]

“I believe… help me with my doubts!” [Mark 9]

The words of a pregnant teen, a father at his wit’s end for his son… the displaced, the weak, the broken… these are the voices of a good surrender. And why? Because there is a better story than the one we see in the moment and they knew it.

It takes strength to be open in the brokenness. And oh, we are broken, are we not? But we are also free and they saw it.

“If [Jesus] sets you free, you are free indeed.” [John 9]

WINTER

This story of Chase’s chest pain was not a one time piece. Darcy would (it’s always our precious girl, bless her tender heart) find him on the floor a few weeks later, clutching his chest.

He fights frequent dizzy spells and has now spent over a month in an event monitor – a monitor he was free of for exactly six hours before putting a holter back on [pictures]. There are clinical words like “orthostatic” and “bradycardia” and machines showing a number in the 40s next to the “BPM”.

There will be more tests, and he will almost assuredly be going back to cardiac rehab … and it’s time to talk to a rheumatology team too.

All the “what if” moments remain. And sometimes it’s really overwhelming to admit that we can’t protect Chase or his siblings the way our hearts cry out to protect them. And yet, I take their hands, and together, we surrender… not because this is good and not because we are defeated and done (though, wow, do we feel it some days) But because there’s a better story than the one we can see…and we know it.

And all of us? Well, we will just be quiet in the unfolding…

Moment by moment.

Of Good and Thankful Things

On Thursday, December 12, 2024… Chase turns 15! He loves to know the exact time of his birth (3:27PM, CST), and he’s been going around and telling everyone that right at the time that the buses leave all the grade schools, he will reach the moment he turns 15. I know this because even the teachers in the high school have mentioned it to me. Oh Chase… 🙂

15 years on this earth… Isn’t that an incredible miracle?!

As always, his birthday request remains that we raise funds to be equally divided between the Anthony Rizzo Family Foundation and Lurie Children’s Hospital (specifically: the Pediatric Brain Tumor Program) .

We, as his family, can’t think of a more fitting plan. Lurie has gifted Chase life and the Rizzo Foundation has instilled hope – Hope and Life – together.

Would you consider donating here? The link will take you to a GoFundMe page called “15×15” and you can give $15 for Chase’s 15 years or a multiple of 15…or more!

Hey… THANK YOU.

Every dollar counts, and this year, it feels like it counts double 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 the Lurie Pediatric Brain Tumor Program and around the country with the Anthony Rizzo Family Foundation.

As we celebrate the gift of Chase’s incredible 15 years, with your help, we can contribute to research, resources, and encouragement for so many children like Chase.

Thank you for doing this with us… Moment by moment.

Hey, again, just a quick note…. Maybe this isn’t your year to give… I get it. It’s been a year, but there is another way you can help. The link, pictures, and updates will be posted on Chase Away Cancer on Facebook and Instagram and I’d so appreciate if you could share the joy and help us get the word out. Thank you, dear ones.

*images courtesy of Margaret Henry*

Over and Over Again

Dear ones,

Chase will be having another surgery.

We are still waiting on the confirmation for the date and time, but yesterday’s meeting with the plastic surgery team confirmed that a stint under general anesthesia and the complete removal of the areas of concern (and a portion of skin around them – present in two very different locations on the body) would be in Chase’s best and immediate interest – “to avoid chances of recurrence”.

Of course, those last words made us want to ask a million questions because “recurrence”, in particular, sounds like a cancery kind of word. But nothing of that will be known until everything is off his body and studied thoroughly.

It’s crazy, because most of us will have something looked at or removed on our skin in our lifetimes – and the majority of removals will be benign. But as we processed last night, we realized that it’s not really about the removal – the surgery. And right now, it’s not even really concern over what the biopsy results might yield. It is the heart-breaking weariness of one more thing. …the taste of drugs in his mouth, slipping into unconsciousness, waking in discomfort, itchy skin, open wounds… all of it. …and dear ones, he does it over and over again and has done it for all of the life that he can recall.

Last night, I asked him if he was okay and he said that he wasn’t…but that he didn’t really want to talk about it until we know the surgery date.

Tears or not… choosing thankfulness.

Moment by moment.

As It Should Be

The dark of the room matched the black of the ultrasound screen as I watched white lines flutter and join, flutter and join, the movement changing every time the tech changed the position of the probe on my boy’s small chest. Slowly, I looked down at his hand, held tightly in mine, processing the questions from the team: “Has he fainted? Have his lips turned blue? Does he complain of pain in his chest?”

Before we started the day, Chase told me he wasn’t worried, but in the moment, he wouldn’t let go of my hand, he refused to eat dinner the night before, and as I woke him from a sound sleep, he wouldn’t stop repeating: “You need to reschedule this appointment”. Fear has so many facets to it, right, dear ones?

The tests were finally completed and the consultation too, and when it was all over, we learned that Chase’s heart was as strong as it could possibly be. In fact, his rhythms neared normal – one of the very few times in Chase’s life that normal has been applied to him.

In the small generic exam room, I sat in the chair across from the cardiologist and accepted her words. I was relieved, but I felt static too… a sort of nothingness. And as I looked at Chase, seated on the edge of the exam table, he wore a deeply tired expression even though he’d just been informed that the doctors were pleased with his stability.

Later, in the car with Chase asleep over his arm rest, I replayed that moment in the room – the total lack of joy at seemingly good news.

Are we burned out on grace? Are we so weary that good things have ceased to feel like a gift? Is this what happens after over a decade in the fight?

Perhaps, and yet, dear ones, I don’t think it’s that simple. You see, yes, Chase’s heart tests were stable. In fact, he will receive a much-needed cardiology break as he will go several months before he needs to be rechecked – which is everything we could hope for! But after that piece of news came the reminder words: The good news we received can’t be ensured for any length of time because they just don’t know what comes next for Chase.

So despite the flutter and join on the ultrasound; despite the blood going where blood goes in the timing needed to reach the whole body… well, Chase’s heart is at risk now and always because, as the team reminded us: Chase himself is high risk.

Stable, but don’t forget: high risk; no future stability guaranteed.

Sitting with those words and their reality and various possibilities feels like watching a beautiful sunny sky to the east even as you feel a dark storm rolling up behind you from the west. You know what I’m talking about, friends? It’s the kind of storm you feel on the skin of your back even as the sun is warm on your face. …and all you can do is wait for it to hit you.

So where do we go from here?

The reality is that we can’t sit with the high risk words at the front of our brains and hearts every day, or we’d never resurface. We would truly and completely burn out. But the heaviness is a very real component of every appointment and I believe it’s because we’re reminded of everything that we wish never happened…everything we wish never existed in our stories. What do I mean by that? Let me share this beautiful quote from author Emily A Jensen, because it’s perfect and she gets it just right:

“Even being at the doctor is a reminder that something isn’t ‘as it should be’ and that can feel like a heavy blanket on our hearts”.

So for a moment, we just let the high risk reality sink in. As Jensen puts it so well, we sit with the ‘heavy blanket on our hearts‘. We let ourselves feel the grief of the ‘isn’t as it should be’, because, dear ones, I truly believe mourning is an integral part of the life process.

We were not created for this brokenness.

And some days, the overall brokenness feels bigger than the good test results. So we weep. And that’s okay – in fact, I believe it’s downright good for the soul. But after the tears, we looked up again, and we remind ourselves that every day is a purposeful gift, and also that nobody has guaranteed stability stamped over their future on this earth. Stability was never promised. And that’s okay because better things await us.

Remember that the end of the story will be good, so if there are tears in your eyes…tears in my eyes… if we feel the weight of the brokenness and wish it wasn’t so… well, then we must not be at the final chapter just yet, dear ones.

Pressing on…