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The screen of my phone showed large white numbers against the swirl of its green background. 

5:32  

Friday, October 2nd

The regular business hours are long minutes past now. 

This will be the last time I pick up my phone and stare at the time for a while. My heart sinks as I accept the knowledge that there will most likely be no calls this week from Chase’s doctors. The waiting for this week has now officially timed out and all I can pray for is that the calls or emails or messages come through sometime next week – hopefully early next week. 

This is not the week that Bob and I will learn why he keeps having seizures and what his EEG said about his brain waves. 

This is not the day we will learn why he keeps bruising so easily and irregularly.

And sometimes I feel anger, but mostly, I just want to cry and cry out the building pressure because I count the bruises every day and I watch the concern on the phlebotomist’s face when he pulled the needle out of Chase’s hand on Friday morning and it takes longer than usual to stop the flow of blood as it soaks the gauze. And I want my phone to ring because I hate the reality of listening to Chase on his Google classroom call taking a reading assessment and tapping out for a few seconds to have a seizure and then going back to trying to read. 

Life feels more wearisome than usual in this season. And while there is nothing terribly wrong, things do not feel terribly right either. 

I hate the purgatory of the wait in that gray, lukewarm space. There are moments I plead with God because surely knowing something horrific would be better than knowing nothing at all. 

Surely this is no fit way to pass the year, God. Surely this doesn’t work out well for any of us… for my heart, for Chase’s body, for your reputation, God. 

This seems impossible. Inscrutable.

And dear ones, there doesn’t feel like a good way to end these thoughts in this moment because my phone is still sitting silent on my bedside table and the pit of my stomach still somersaults every time I think about it lighting up with the hospital number sometime this next week. 

What if there’s bad news? 

How might I feel about good news?

What if there’s no news at all and the answer is just to wait some more? …to watch a little longer yet?

I still want to cry my eyes out and I fight God a lot of the days and nights with these questions and many others like them. But today, I watched the livestream of a church brother stand behind the solid wood of the pulpit and bring my whole house of expectations and waiting down around me with these words about God’s impossible ways: 

“Perhaps you have been on a flight, arriving at your destination, or at least above your destination. You are ready to begin your descent, but instead of descending, you wind up circling in the air. You can see the city below. It’s right there! You can see the lights! And perhaps you think ‘Why are we circling around forever? This seems pointless! We are literally just going around in circles!’ But we cannot see what air traffic control sees: six flights arriving at the same time, or a patch of turbulence just below, or snow plows clearing the runway. Calling the the Creator God to account for his sovereign, wise, but often inscrutable ways is like calling air traffic control to account while in a holding pattern. […] For our true life is not in demonstrating that God is somehow wrong in His decisions or apparent inactivity. Neither is our truest life or most enduring joy tied to becoming well informed on all the ins and outs of God’s hidden purposes. […] Our best good lies in God exercising his inscrutable wisdom as Creator and His incomparable mercy as redeemer for the everlasting good of us and of all creation.”

Dr. Dan Brendsel

In other words, the story is still unfolding. And just because it feels still doesn’t mean it has stopped moving. There are just layers we cannot yet see. 

I still hate the wait, but I am encouraged in the reminder that it not forever. 

In a holding pattern, it is disorienting and the minutes can feel like hours, but it is never so very long before you are safely home again. So we will wait a while longer yet… 

Moment by moment. 

Since early fall and the start of school, Chase has occasionally complained of feeling dizzy or “weird” for brief moments.

After lengthy conversations about drug interactions, undergoing radioactive iodine treatment for thyroid cancer, and so many tests to check his levels, we somehow made it through the holidays to January 14th, when Darcy came running to find me after dinner. 

“Chase says his head is moving by itself and it won’t stop!” Somehow, it’s almost always Darcy who catches a seizure first, bless her heart. I ran to the couch with my heart in my throat, ready to ream him out for messing around when he angled his head to look up at me and the turn was all wrong. And then I saw it was all wrong because his eyes seemed wedged against the back corner of their sockets. 

“You look funny.” He giggled up at me.

And in the next breath, his head started moving in that unmistakable rhythmic twitch that could only mean one thing: his brain was staging yet another revolt. 

Several weeks and nearly twenty-four hours of EEG monitoring later, we were able to alert his teams during one of those dizzy moments and I got a call from his doctor within a day, informing me that Chase is indeed having more seizures.

For a moment, I found myself pushing back at the doctors with this news. “Wouldn’t he look asleep or dazed? He was talking to me, responding to me…”

“Yes, but,” the doctor quietly pointed out, “even though he was still answering you, we could see on the video monitoring that he was aware of the seizure. He could feel it happening even as you stood next to his bed.”

While I spoke to him, he silently, invisibly seized, and what I took for slight distraction in his manner was actually him not being completely present in that room with me. And truly, I can hardly think of anything more horribly powerless than standing next to your child, helpless to assist them, protect them, or even love them through a trauma – because you do not know that they’re having the experience and they can’t even find a way to tell you. 

Since the time of the EEG results two weeks ago, Chase’s brain has been protected with higher doses of anti-convulsant medication, but there is a small piece of outstanding worry…

During the course of surgery and treatment for his initial central nervous system cancer, Chase’s brain experienced quite a few traumas. His neurosurgery team has always monitored the trauma areas through the years, watching for changes on scans or symptoms in his daily life and until now, the areas have remained dormant and Chase has remained asymptomatic, but there is a small chance that the continued seizures are a sign of change – because, you see, these new seizures are occurring on the undamaged side of his brain – an area where there has previously been no (and should be no) seizure activity. 

And if the problem is indeed a sort of rupture of these trauma spots, there is a chance that they may resolve on their own, like a wound healing true on the top of your skin. But there is also a chance that a neurosurgeon might need to intervene for the sake of Chase’s brain. And if that second and far more rare outcome is required, it would most likely mean a surgical intervention on his brain – a thing that has not occurred since August of 2012. 

And it’s hard to take the word “rare” as a comfort when it comes to statistics, because the fact that Chase breathes is rare. We are overwhelmed by the ‘what if’ of this scenario, but we also welcome the chance for answers, knowing that continued, inexplicable, unpredictable rounds of nearly invisible seizures are not in the best interest of who Chase is and what he can do. 

And by the time you read this today, Chase will most likely be heading into an hours-long MRI, moved from late spring, to now (at the request of his neurosurgeon). 

I wish I could tell you what was on my heart and how to pray, but now, as I write all this out, I find myself exceptionally weary of the damages, exhausted from a life where the prize for survival is a seemingly endless litany of complication and sorrow. 

But I know you all will pray because you hold us up when we are too weak to think of the words for ourselves.

And there will be hope in the morning again.

Because God’s steadfast love endures forever. 

Moment by moment. 

Today, the kids and I cleaned the house. 

And as I wiped dusty corners and caught the fresh cotton scent of new linens snapped wide and tight over soft mattresses, I could not help but ponder the part of the human existence that wants to put things into good order before a change. 

Before the far away trip…before the surgery…before the last rites…before the baby is born…

There’s a silent moment when we wipe the slate clean and acknowledge that whenever, however, and if ever we return to this space, we will not be as we once were, and so we perform the same tasks we’ve done so many times before – just one last time before a change. 

We wipe away the dust as if we can keep our dust-to-dust beginning and end just a little further past reality than our outstretched hands. 

Whatever may pass, and whatever lies before me… 

‘10,000 Reasons’, Matt Redman

Tomorrow morning at 11:00AM (CST), Chase will lie still and quiet in a CT scan to look – and hopefully find answer to – why both his lungs and kidneys absorbed significant amounts of radioactive iodine. 

The only cells that should absorb the glow of that days ago pill are the cancer cells. And while it could be some sort of anomaly causing his lungs and kidneys to glow so bright for the radiologists, there is the very real shadow of multi-organ metastatic disease – the clinical words for rogue cancer cells in places they should never, ever be – driving percentages of survival down as they spread. 

It might still be an anomaly. And Chase has never been one for percentages, thank you Jesus. But today, the kids and I cleaned the house. 

Because after tomorrow’s CT scan, we will either be granted a reprieve of treatment, as originally planned, or we will be entering a fight for Chase’s life – the likes of which I suspect we have not seen since the beginning. 

And sometimes, when we must face the dust-to-dust reality of the air we breathe so tenuously in the space around us, we push back the dirt, snap and spread the fresh linens like a semblance of control, and then remember that all that really matters is the Love we’ve been given and the love we have to give.

Pray for us as we go…

Moment by moment.

Perfect love expels all fear…

1 John 4:18b (NLT)

He cried “Please, Mom, NO!” while they slipped the needle into his already bruised skin. The third time’s supposedly the charm and it wasn’t a great start to the treatment day.

When the labs were finally done, the pastor came in and held a small red funnel near the bed, holding it out to him as he sniffled and wiped his tears. “Chase, do you know that God will give you peace? He says not to worry, but to talk to him, and he will give us peace in our worries. In fact, he will give us so much peace that we might as well need a funnel to channel it into the daily life.” He put the red plastic into Chase’s outstretched hands – “I was trying to think of a picture of peace for you, and so I brought you a funnel. In fact, I got this one from Ace Hardware. Have you ever heard of that store? I think they might have had something to do with this very hospital unit.” He smiled and Chase giggled for the first time since entering the lead-reinforced room because Ace Hardware was a major catalyst for the new-built space he sits in and they both know it well. “I wanted you to have something in your hands to remember – so that every time you hold this funnel, you think ‘peace’.” 

Chase smiled, putting the funnel to his mouth, like a trumpet, and said “peace”. And then it was in my hands too. “Say ‘peace’, Mom.” And the funnel passed to each person around the bed, whispering the word ‘peace’ before Chase spoke up once again: “Can you put it on your side of the line, Mom.” He gestures to the red and yellow tape stretching like a caution across the papered floor. “I want to be able to keep it after today, okay?” And I nodded as we whispered ‘peace’ once more, and then gathered around his bed to pray for him and this thing that he was about to do. And no sooner was the ‘amen’ spoken before staff started entering the space. Nuclear medicine to oversee the dose, oncology to oversee the patient, doctors and witnesses because this was both a momentous and cautious thing centered around a boy in a plastic-wrapped bed and a rolling cart with a tiny, sealed vault containing a single cancer-burning pill.

At then, at 2:04, with all the people standing around him, he tipped back the cup (with his gloved hands – because the pill should not even accidentally touch his skin) swallowed it down, and blinked at the nurses and doctors around him: “Is that all there is to it?” And we laughed because his words were classic you-and-what-army Chase.

But that easy swallow wasn’t quite all. The nausea set in quickly like a chemo, just not as intense. He slowly sank into the bed, growing more quiet and restless, until sleep finally came late in the hours of the night. “Why did I need to do this?” The question was whispered across the line from his curled-up little body in the bed.

And when he sighed and turned, I walked to the line on the floor and whispered – fighting my own impulse to reach for him, comfort him – “Can I do anything for you?”

And he sighed. “Just pray for me.”

But joy has unusual ways of coming to us in the morning. And when, after the second Geiger count and consultation, they said “We’ve never – in the time I’ve been in this hospital – seen things happen this quickly” – I just smiled and said “It’s Chase.”

You see, Chase’s size (or lack thereof) – the very thing it’s hard for him to accept on most days – meant that his radioactive dose was lower, which meant that his time ‘behind the line’ ended up being shorter.

Chase was discharged from the hospital in twenty-six hours.

He is still in a soft isolation – the part where we remain six feet separated – and anything that he touches needs a little extra care, so we are not home yet, but we are not in the hospital anymore. And while we miss family and the gift of casual touch, we are hopeful that we will be back home and with family by Monday night. 

On this following Thursday [11/21], Chase will undergo a full body scan to monitor the effects of the treatment and what areas of his body “light up” with cancer. And there might yet be another treatment or surgery in his future, and there will be frequent checks and blood drawn as he recovers from this, but because of how long these tiny grams of radioactive iodine will live quietly in his body, the teams would most likely not even consider more treatment or surgery for at least a year. 

After eleven months of sitting with this second diagnosis and wondering what the next step will be, in these last weeks of 2019, it is suddenly easier to breathe. With the payment of these short days of tears and separation, a year’s time has been purchased.

And isn’t this the way of cancer and pain and life? Love and hope are the only things you can take across the line that aren’t waste, there are always parts to do on your own where the only thing that reaches you is prayer, and then – just at the moment you’ve reached your limit, there’s an unexpected joy and the clouds part to show the very thing you’ve fought just gave you an unexpected gift – because pain is never the end of our stories when Jesus writes them redeemed.

Thyroid cancer, meet radioactive iodine. We won’t miss you too much. See you – or not – in a year. 

Moment by moment. 

Then you will experience God’s peace, which exceeds anything we can understand.

Philippians 4:7a