Uncategorized – Page 4 – CHASE AWAY CANCER

When I Need To Know

It was hour four.

We were barely into the new school day, the new school year.

It was hour four when the first police car came rushing past me on the trail where I was walking. It could have been going anywhere, but the most obvious, most straightforward destination was the public high school little more than a block ahead of me on the road…and my heart dropped.

Not two minutes later, another car with its bright lights shot past; the breeze in its wake reaching me where I was already walking faster…where I tried not to run.

I could hear more sirens in the distance. And by the time I reached the top of the hill, the street was closing down.

“Please no, Jesus… not this…”

Within minutes, parents began gathering on the street corners, outside the perimeter. And as I watched, an official and unmarked car pull onto the sidewalk in front of the first door, and men with serious faces and bulletproof vests pulled out a floor plan of the building, laying into it to study. And as a command center appeared to be establishing in front of my eyes, the text came through my phone:

“We are in a lockdown. I’m safe. I’m in [my class] right now and [the teacher] barricaded the door and has a bat.”

I stood outside the building, as close as the police would let me, and there was nothing I could do but picture my baby crouched at a desk somewhere inside while I texted her:

“I love you.”

It all passed in what was probably minutes, but felt like lifetimes. But even when the streets re-opened and the lockdown lifted, my heart just wouldn’t be still within me.

A little later, she came home and I went running to her and hugged her so close and she told me about the cries and fear and how she had felt so calm and I was so, so thankful, and yet my heart was not quiet within me.

I stood outside.

I had felt the earth under me as the unmarked cars drove fast to reach the high school in time for some as yet unnamed threat.

I had watched them unfurl the floor plan to the building.

I had to stand outside, feeling all the helplessness, while my baby girl texted me from the classroom – where the teacher’s desk, a baseball bat, and the bravery of the room was all that stood between them and a threat.

If it was over… why was my heart still hurting? It was like I was full up of all these feelings that were no longer needed, but had nowhere else to go. And it left me questioning where we put the fear and the anger and the horrible helplessness? And why do those feelings insist on festering long past a trauma point?

My heart in turmoil, I did what a mama often does: I turned inward and began to make lunch.

“What exactly happened, Mom?” Karsten, my youngest boy, walked into the kitchen with worry still in his sensitive eyes and voiced the question we all were thinking.

“I honestly don’t know.” I was auto-piloting the conversation. I just wanted to finish making the lunch and sit down for a while, not talk to anyone for a while, take deep breaths. “All I know is that it wasn’t an active threat, and it’s over now, but those are all the details I have. Don’t worry, buddy.” I wanted to laugh as I heard myself say the words – heard myself tell him not to be anxious when my own heart still beat so unsettled within me.

He sighed as he wiped fingers through his too long hair. “I just… I need to know everything. I feel like I can’t relax until I know exactly what happened, Mom.”

His words stopped me dead and I heard myself in them. I heard the disquiet, the unsettled beat of my own heart, and I heard myself not just that day in a moment of school fear and threat… oh no, I heard the echoes of my voice every time something has happened that I don’t understand:

“I just… God, I need to know everything. I feel like I can’t accept this from you God, until I know exactly what happened.”

I say it all the time. But when it comes to the heart of it, all my digging and demanding brings me more anger, not stillness – and certainly not peace.

Dear ones, I wish we had all the answers. I wish everything before us was perfectly clear and every pain came with an apparent and appropriate purpose laid out neatly at the beginning where we could see it right away. I wish that so, so much for myself and for you too!

But I believe that true heart stillness came not in the answers, but in the presence of God himself.

It’s strange because stillness is such a peace word, and yet, in our faith journey, it’s often a concept we’re fighting for. Stillness is not easy when the world isn’t still around you.

There are so many questions we hold in our struggling hearts. There are questions on issues that are very near and dear to us. And there are heartbreakingly questions that we might struggle with, fight for stillness over for every single minute of this life until we look into the face of Jesus himself and perhaps then see the answers in the scars on his hands and feet. [Won’t that be an awesome day?]

And until that day…the same day that all the tears will be gone forever…until that day, I think the best and only answer is to press on. We aren’t to the end of the story yet…

Lord, I trust in your unfailing love when my heart is unsettled.
Lamentations 3:22-23

Lord, I trust that your plans are good when they feel too hard.
Jeremiah 29:11

Lord, I accept what you give even when I can’t see the “why”.
Job 13:15

Through a mirror dimly…

Moment by moment.

Epilogue (of sorts): The first day incident at the hight school ended with the loveliest and best resolution possible in that there had been no malice or prank, but rather a horrible, frightening mistake that couldn’t be treated like a mistake until after the building had been secured. As always, we are so deeply thankful for diligent and compassionate first responders.

Sing Over Me: On Grief and Joy

The end of July is a strange shadow season to me. Some years are easier than others, but not this year. Perhaps it is the marking of the first decade, but even now, the feel of the hot Midwest wind, the position of the sun on the earth; all of the July-ness seems to drag me back to a moment in time when the fabric of our lives felt like it had been torn in two. It is a memory now, yes, but I’ve come to equate this time of year with a deep grief and it tends to resurface every year no matter how I prepare or how far away from it we are now. And every year, I ask myself why it comes up, where it goes when it passes (which it inevitably does), and finally, how to hold it carefully with open hands and a purposeful heart.

I think I will probably ask these same questions until the day I die, but as I wrestle and ask my way through them this tenth year, I think about everyone who ever stood bedside and wished for less suffering even while they’re thankful the one they love still breathes. And I think about everyone who ever stood graveside with a broken, bleeding soul, still breathing pain-filled thanks that there’s no more pain. My heart goes out to everyone who has ever smiled through their tears and everyone who has ever cried for no reason other than that life is just so…very…hard.

My heart is for you as I struggle with the questions again, wrestle through the shadows of a timeline long past, because I cried most of this last week. The good and the bad were all mixed together and that brings a lot of feelings.

It’s such a gift.

We are so thankful.

Chase is a miracle.

But he’s also been hurting more than not for ten years and we’ve all hurt with him. We are tired and I know he is too.

Thinking through all of these pieces, I cried because I couldn’t see the purpose for the shadows. I cried because I wanted to move past this late July part and move into the place where I could feel the light again.

But the light didn’t come right away as it sometimes does. I felt empty. And after fighting it and excusing it and even trying to tamp it down all week, I realized that it is not so bad to need to grieve. It is not wrong to weep for the brokenness that is as ever present as Chase’s very life.

We celebrate Chase, but we weep for him too. Does that make sense? I hope it does. It’s how I can smile as I watch him run even as my eyes fill with tears.

The good and the hard rarely come in their separate turns – have you ever noticed that? More often, they seem to arrive all wrapped up together in such a way that thankfulness and grief walk hand in hand – usually with a white-knuckled grip.

So where did I land in my grief this time around? I landed here: there is One who knows; who understands. Psalm 56 describes how our tears aren’t wasted to Him. Our grief isn’t meaningless and our struggles are important and known.

You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.
Psalm 56:8 NLT

So, if you want to, if you need to today (as I have needed to this week)…I hope you are able to cry. It is not a bad thing to mourn all the things we wish were other than what they are. And afterwards, dry your tears knowing they were Seen and remember with me (as I remember in this Chase fight) that while the pain and weariness might feel like forever and a day, it’s only a dark night and the dawn is coming. And when the dawn arrives, there will be joy once again.

Giving raw thanks for Chase’s life and unfolding story…

Moment by moment.

With his love, he will calm all your fears. He will rejoice over you with joyful songs.
Zepheniah 3:17b

Dear Self: Grace In Hindsight

[originally posted in 2019 as A Letter For The Minute Before]

Dear 2012 Self,

Tonight, you are about to climb into bed – utterly beyond caring after days of worry – too tired to do more than collapse.

I know you saw how Chase’s hand shook when he was taking off his shoes in the hallway tonight. I know you saw it and it stopped and so you doubted yourself. I know you’re secretly really angry because the doctors aren’t listening to you and don’t know.

It’s okay.

Everybody wishes they could see things more clearly at times. Everybody wishes other people had the answers when they haven’t a clue.

Tomorrow morning is going to come earlier than you think and it’s going to bring the answers you’ve been wanting so desperately, but they will come with a price. A big one. Chase is in more trouble than you think he is.

So sleep deep tonight. And when Darcy comes into your room in just a few hours, listen to her the first time – she knows what she saw.

[Oh, and for the love… put on a bra before the firemen and paramedics walk through the door – you’ll wish you had it on all day.]

Kiss everyone extra sweet and hug them all a little tighter when you tuck them in. Everything you know right now is going to twist and vault like a bad case of vertigo.

You are about to find out that you’re both weaker and stronger than you think. And that God’s love and grace is worth it all – despite all the times you will scream and fight and hate Him just a little bit for what will feel like unanswered prayer.

We know Chase was the accident baby. The one who showed up despite the birth control. But I think you’ve always known in your heart that he was special. And we’ve confirmed it a thousand more times since you first thought it when you held him tight at birth.

So sleep deep for these last few hours before everything changes.

This isn’t your fault. It’s nothing you did or did not do. That’s not how this works.

It’s okay to cry. And believe me, because it seems crazy, but joy will come when you least expect it – even as you sob.

Give yourself grace and be real because it’s about to get really intense.

Life is precious.

Sending you a big hug from 2022 –

Your Ten-Year-Older Self

A Brief History Of A Long Road

DO YOU EVER WONDER HOW IT ALL STARTED…??

On Sunday, Chase’s marks ten years of cancer fighting. TEN YEARS is quite the journey, dear ones, isn’t it? In case you’ve joined us more recently, or in case you’re curious or it’s been a while… here’s what brought us to this place:

Just before dawn on Tuesday, July 31, 2012, a six-year-old Darcy woke us to complain that Chase – only two and still in his crib – was “moving around and won’t stop”.

“El…! You need to come here! Chase is having a seizure!” The mix of deadly calm and worry in Bob’s words propelled me from the bed before my eyes were fully open, heart racing.

And just like that, we woke to the first day of a completely different life, never to return to the one we had known ’til then.

Within hours, we would learn that there was “a large mass” shoving one half of his brain into the other (causing the seizure) and that the hospital we had been taken to by the ambulance wasn’t equipped to deal with cases on this level.

By noon, Chase had been transferred downtown to the brand new Ann & Robert H. Lurie Children’s Hospital of Chicago facility.

Within hours of the transfer, we had learned that he was having near constant invisible seizures and he was moved to the intensive care unit.

By early Thursday morning, 48 hours later, we had signed papers, said goodbye, and handed our little boy to a team of neurosurgeons.

The surgery was mercifully short as brain surgeries go (under four hours), but the news was a worst case scenario: While the initial tumor had been successfully removed, Chase’s lead neurosurgeon gently explained that the pathology was not only deeply malignant, but also highly aggressive, and that he had actually visualized cancer cells all over the top of his brain…too numerous to be removed. The scans backed up the doctor’s assessment. There was cancer all over the brain, in the spinal fluid, and lining the spinal column.

The plans were placed, the words were guarded, and nobody expected Chase to survive his third birthday.

But he would…

The next nearly two years brought seemingly endless complications, procedures, and days spent living in the hospital. We moved in with my parents, who cared for our other three children. Chase went through so much chemo, so many days of radiation, and bag after bag of transfusions – so many interventions that Bob and I l have since lost count.

He finished treatment sixteen months to the day after starting and immediately began extensive therapies to improve his quality of life.

He could speak, but he didn’t understand what words meant.

He wasn’t growing.

He couldn’t hear well.

He couldn’t see well.

He had almost no short term memory.

And we were informed that these would most likely be just the beginning of side effects.

There were routine scans every few months.

A year later, the MRI picked up a small growth and we battled relapse fear – another MRI after six of the longest weeks of our lives showing what was most likely a radiation damage and he was diagnosed with benign tumors/cavernous malformations.

The next summer, he was officially diagnosed with significant hearing loss.

The following spring, he had two separate surgeries to remove cataracts and try to improve his vision.

Three weeks after the first cataract surgery occurred in 2016, Tyndale House Publishers published my labor of love – “Chase Away Cancer” – the story of those first six years and some of the lessons we’d learned along the way.

We settled into post cancer complications and life.

A little over two years later (after the longest season of only routine appointments and few emergencies) an MRI pick up strange thyroid growths and in the last week of January, 2019, Chase was diagnosed with thyroid cancer and had his entire thyroid removed.

A few months later, Chase had his first visible seizure in seven years.

Only weeks later, his thyroid site showed cancer in a couple of surrounding lymph nodes and despite a full body scan showing the spread to be contained to the thyroid area, Chase was scheduled for radioactive iodine therapy two weeks before Thanksgiving.

Since that time, despite frequent health anomalies that seem to require lots of appointments, tests, and even occasional surgeries and procedures, Chase continues with his two-cancer diagnosis – the primary never having relapsed, the secondary having been stopped from spreading.

We have no idea what comes next. Although we will be meeting with a genetic specialist in September to try and better understand why Chase’s body succumbs to proliferating cells the way it does and if we can possibly protect him from ever having another diagnosis.

His story has been shared from teary hospital rooms to history-packed halls of the White House. And if we’ve learned one thing in ten years, it’s that Chase is a precious law unto himself, a broken, beautiful story that only God himself knows completely.

As always, thank you for coming on this journey with us.

Moment by moment.

[Chase’s family includes Dad (Bob), Mom (Ellie – who is the primary writer on CAC), older sister Darcy (16), older brother Aidan (13), and younger brother Karsten (10)]

Blood, Tears, and Laughter

The tourniquet pinches tight and I can feel his body fight the uncomfortable feeling even as he sits as still as he can on my lap, couched as we both are in the extra large, padded chair with the wide arms.

“Can you see a vein?” His voice is tremulous with worry.

There is a tense moment when the needle penetrates skin and he is still like death – we all hold our breath and pray for a straight line – because his poor, damaged veins all too often elude the draw and that way lies madness. I remember a time when he had to be physically restrained to do this kind of a hospital task. Now, while he still hates it and at times will whimper and flinch, he will not move away or fight the tech. And I’m so glad for this small mercy along the way.

The gauge is so small in his arm as the blood finally flows that we three, Chase, the tech, and I, all sit in a frozen sort of silence. I can hear Chase breathing loud and deep. Someone once told him that holding his breath can make the draw harder and so now he practices crazy deep breathing while the tech takes the blood out of his body like a present in bright colored tubes for his doctors.

But then something strikes him sideways and he cackles – actually laughs a little in his weird, quick, infectious way. And the tech and I fight smiles because, after all, who laughs in a blood draw? I can literally hear a child crying across the hall even now.

And then he looks down at his arm: “When I laugh, does the blood come out faster?” He asks with wonder.

The tech smiles and says she isn’t sure, but perhaps he should try again.

She barely gets the words out before he giggles again and then looks down curious and bright at the length of tube coming out of his arm.

“Did it help?” He asks her with a smile.

And she smiles back and says it can’t hurt.

So Chase laughed his way through the rest of the draw.

And here’s the truth of it, dear ones: even if Chase’s laughter didn’t help his blood, it helped him. He began to relax, to breathe easier, and the time passed much more quickly for him.

He found joy in the middle of blood and tears.

And in the end, perhaps it helped on a scientific level. Perhaps the blood moved faster with the vibrations of his laughter echoing through his frame. Or maybe it didn’t change the outcome one iota.

But in that moment, I realized that often times, finding the joy is less about the actual circumstances and more about changing us within the circumstances.

Isn’t life wild?

Joy doesn’t always make it better.

Blood and tears are everywhere.

But true joy can always find us…even in the worst of it.

Choosing that joy tonight.

Moment by moment.

“[God,] You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.”
Psalm 16:11 [ESV]

Chase’s lab numbers were off and so changes will be made and hopefully he will feel better for it soon. There are more scans in just a few weeks and a small surgery question that needs answering in just a few months, but for now, we hold steady and look forward to celebrating the end of his sixth grade school year.

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