Preparing For The Next Year

It is absolutely incredible to me that it’s been a whole year now since I stood in the hallway of the oncology floor with Chase’s doctor. 

“Did anyone call you?” She paused. “The results of the MRI were great. His brain and spine are clear.”

“Yes,” I remember saying. “We met with neurosurgery right after the scan.” And I remember thinking: another year – we’ve bought ourselves another year with this news.

“There’s just one thing…” the doctor said, casual and calm in the hall. Because it wasn’t a big deal. It really wasn’t. “The MRI picked up something in his thyroid. It’s most likely just a nodule, but we will get you set up with endocrinology for some tests in the next few weeks.”

January 2019

One whole year ago now. 

Diagnosis.

Surgery.

Tests.

Relapse/growth.

And finally treatment.

What a year!

But now it’s is a new year, a new decade, and Chase is hopefully turning a new corner.

The radioactive iodine will be a present force in his body for weeks and months yet, so it’s very difficult to define exactly what his status is in this moment, because he actively has active cancer, but he passively, invisibly has active treatment too. I suppose the best way to describe the fight he is in right now is with the picture of a muted TV. The screen is still on and the watcher is still completely aware of it, but cannot follow the details of the game/movie/show because it is silent. That is Chase’s fight right now. He is in passive treatment; an active fighter, the battle on mute, but completely still occurring. The only way we will be able to have a view into the fight will be through ultrasounds every few months, and lab work every four weeks or so – an important part of maintaining his thyroid medication levels, and an early warning system for anything else growing.

And on that same subject, Chase’s last labs showed numbers that reflected his fight in other areas. He had to discontinue his growth hormone shots when he was diagnosed, and his most recent labs confirmed what has been suspected about his little body for years now – it does not have what it needs to sustain an endocrine system long-term. And that breaks my heart because he’s a broken body in a broken world and I’m sad for the struggles he faces along the way – even as he braves them again and again – but for now, these pieces are also treatable. 

So, we will treat him and care for him with careful monitoring and daily injections – giving his body the best chance it has to thrive.

December 2019

And none of it individually is hard or horrible, but altogether, it makes all of us a little weary because it’s the price of doing business as broken bodies in a broken world and our hearts long for the day of healing when we can see Jesus face-to-face and can be free of things like cancer and tears and poking with needles again and again. 

And until then, we keep breathing because there will always be hope and purpose in the journey. Thank you for doing another year with us on this road.

Moment by moment

“God is always doing 10,000 things in your life, and you may be aware of three of them. … There is no power in the universe that can stop him from fulfilling his totally good plans for you.”

John Piper

“I know that you can do all things, and that no purpose of yours can be thwarted.”

Job 42:2

Farther Along

Farther along we’ll know all about it
Farther along we’ll understand why
Cheer up my brothers, live in the sunshine
We’ll understand this, all by and by… Josh Garrels

The word is in and the news is out: we’ve been given the gift of more time. It’s a heady feeling and a deep one too as the responsibility of shepherding such an incredible, atypical life is something we do not take lightly.

In the last two days, Chase has had a complete brain and spine MRI, an ECHO, a hearing test, a procedure to clean his ears and check for tubes, and a hearing re-test – in addition to meeting with his endocrinology and neuro-oncology teams. The days have been physically and emotionally packed and Chase did an AMAZING job – even undergoing an IV and the MRI sedation process with less medicine than usual; a decision that made him far more cognizant during needle pain and separation from us.

Chase’s hearing is going, but is stable for now (no more excuses about “not hearing you say to clean up, Mom“…) and the ventricles of his heart are strong (something we do not take for granted in a post-chemo body).

And now, the moment of truth: the MRI…

STABLE.

The monitored growths continue to expand, but all teams involved feel optimistic that they don’t show cancer characteristics. The biggest concern right now is that the largest growth is getting close to a ventricle and that scenario requires both careful monitoring and possible intervention. There are also a few cavernomas (a cluster of abnormal blood cells) that are making themselves known and grown on the last few scans and those too will bear watching. In other words, for good, bad, and broken, Chase’s brain is showing the scars of its battle wounds.

This farther along day brings some answers, some more oxygen with which to breath, and a few things on which to take action.

First, while Chase’s official scans will be moved to even further intervals (a year!), he still needs to have small scans of the ventricles every six months to monitor growths and cavernomas.

Now, it is the time to prayerfully, carefully pursue growth hormone with the endocrine team as Chase’s poor, little body can’t do this on its own. More on this in the coming months, I know.

And last, well, the last thing I have to tell you deserves it’s very own written space. Stay tuned…

Moment by moment.

Chase checks out his MRI films with Dr. Lulla and Dr. Hartsell

Surgery Update

It’s been a long day.

Surgery went very well and Chase went into it with Lucas’ name still written on his arm. He was a complete boss and even his Panda Bear (who, according to Chase, is really a dog named “Panda Bear” who can bark and is prone to getting in doctors and nurses’ faces and screaming) behaved himself admirably.

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But since waking, he has been in a lot more pain than he was last time, his anesthesia “detox” has seemed a lot more difficult, and his right eye is quite weak, so with the left eye patched, he’s been navigating like he’s blind…when he walks at all. He’s miserable, but it’s over and done now, and for that, we are very thankful.

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This is the hard season — the time when we try and comfort in the middle of the damage that we ourselves have allowed. It’s guilt-producing and humbling and would break us if not for the grace of God.

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We are so thankful for your prayers and encouragement!

Bob was actually able to be off for the entire day (a minor miracle), we had a dear friend show up in pre-op to encourage us, Chase’s teacher and her family sent wonderful Spider-Man gifts, his class recorded a special video for him, Tyndale staff brought us dinner, and all the doctors and nurses have become good friends in the last month. So in truth, even though it was a hard day and will probably be a rough night, we are incredibly blessed.
And I’ve been getting texts of people with their books today – my heart is full.

Moment by moment.