Of Trauma And Answers

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.