Keeping It Interesting

This one… he likes to keep it interesting, doesn’t he? We spent yesterday morning talking with his endocrine team after some really wild labs.

 
Chase’s numbers are suddenly kind of crazy and it could be for a lot of different reasons, but the most important and immediate concern is getting his levels back under control – and quickly


You see, the longer his levels are all over the place, the more likely his thyroid-free body is to create a favorable environment for thyroid cancer re-growth – in his lymph nodes, especially. [spoiler alert: we *super* don’t want that]


So for now, the plan is to make immediate changes to the medications that are helping his body regulate things, and then we re-test everything in a few weeks.

 
As a parent who walked into this childhood cancer world under the auspices of a brain tumor diagnosis, waiting to re-test is a terrifying prospect because brain tumors often grow incredibly quickly and hours to days can make a huge difference in the end result. But… as Chase’s [very patient] endocrine team has had to remind me many times over the last four years: thyroid cancer is a different cancer with its own unique schedule of growth – in that way, at least, it is a far more gentle cancer. 


So we sit for these weeks until the re-test and trust Chase’s weary body and his levels to the One who knows him best.

Moment by moment.

Waiting Well

Up until 5:30 on November 2nd, I could have told you Chase’s appointments and the general expectations through the end of this 2021 year. Everything was laid out…scheduled… neat, even. (…as much as we ever get with Chase)

But on November 2nd at 5:30, right as I was in the kitchen making dinner, I got a call from the oncology team, the result of which was that Chase needs more blood work and an MRI of his liver and kidneys. 

Dear ones, it’s a long and complicated explanation full of damages and inexplicable issues, and I’m sure everything will unfold at some point, but suffice to say that there is a chance that his liver is struggling through transfusion-related damage. And while they’re looking at his liver in the scan, they want to look at his kidneys too, because there is a noticeable growth there.

It’s more than possible that this is just a precautionary measure, and the growth is benign, but the news definitely surprised us. And honestly, it’s hard to hear that anything is growing in or on Chase – ever. 

Since that phone call, our minds have gone a hundred places and our hearts beat a rhythm of post trauma. And if I’m being honest, I’ll probably continue to vacillate between “don’t be silly, it’s nothing!” and “they said the spot in his thyroid was nothing too” until the tests are done and read. 

And that, oh that… that done-ness is a ways ahead of us yet. For reasons that only God himself knows, the earliest scan date is December 21st. So we will move through the holidays, through Chase’s birthday, through these next weeks in a season of more-than-usual waiting.

How we long to not just survive the wait, but thrive in the wait – to truly wait well.

The Saturday morning before I received the call from his team, I took Chase for early blood work and it was freezing, rainy, and dark. When I voiced worry and weather-complaining words, Chase said this, and it feels timely: 

“Mom, don’t worry. Jesus has lighted our way in the dark. He will do it again. It will be okay.”

And really…there’s no better reminder: He is light in the darkness and peace in the wait. It is well with our souls and our wait.

So we’ll sit with this a while longer…

Moment by moment. 

While my plan is to keep a chipper attitude and show God that I am a good student so he will bring my waiting to a close, God wants something even better for me. Rather than end my waiting, he wants to bless my waiting.”

Betsy Childs Howard, Seasons Of Waiting
[Chase wearing my glasses to make us laugh]

Of Waiting, Believing, And A Rusty Leg

Yesterday was not the day we expected.

The outcome could have been so much worse and for that, we praise. However, it was a shadow day, a “cancer” day, a reminder that we live in and with something that can threaten whenever it wants. It was a day for remembered dependence on God in ways that summer pool days don’t always impress upon me.

At the end of it all, we were all six under the same roof with no hospitals or sirens and we slept – truly slept – and for that I’m thankful.

At this moment in time, here’s all I know for sure: there’s a mercy that’s new every morning and a proven refuge in times of trouble.

Yesterday was a day when it was easier for me to throw up words onto social media sites, but I’ve copied them here today. May they encourage you to wait on Him, trust in Him, and see your wait as a beautiful part of the journey.

Moment by moment.

Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the LordHe alone is my refuge, my place of safety; he is my God, and I trust him.” Psalm 91:1-2 (NLT)


10:15 AM —

In the first hour of this morning’s summer camp, I got a call from a friend at church indicating that Chase had been brought in complaining of a headache, right eye pain, and lack of feeling in his right leg – even some “dragging” of the leg.
[cue the parent panic…especially as his tumor presented on his left side]
By the time I got to him, he could walk, he’d never stopped talking, and he showed no signs of seizing, but he was so tired that he spoke hardly at all (for those who know Chase, you know this is out of the ordinary) and slept for a few hours following my bringing him home.
He’s now more “himself”, but keeps resting and sleeping – saying his head hurts and his leg feels “rusty” even though it works.
In times like this, it feels impossible not to panic, but we are trying to live in grace in the moment.
Right now, for me (Chase’s mom), that looks like this: setting a timer for 30 minutes and only checking my email when the alarm sounds – to avoid frantically opening the mail app on my phone every 20 seconds in hopes of hearing from Chase’s doctors.
It could be a virus, it could be his growth hormones, it could be nothing, it could be something… I don’t know and part of me doesn’t want to share this, but I’m writing it out because I believe I’m not the only one who is having to actively pursue calm and joy in the middle of a day I didn’t expect.
Peace is not coming naturally like breathing, so, I am CHOOSING it.
Choosing peace.
Choosing hope.
Moment by moment.


7:30 PM —

You all are so awesome for walking this journey with us.
I just heard from Chase’s doctors… apparently it could be one of a few things (no easy road for our boy), but it was most likely either a seizure of some kind, or even more likely, some sort of migraine episode…because, apparently, kids like Chase start getting more/frequent/painful migraines.
Oh, the side effects of breathing…
Only time will tell what really happened today.
If this is once-and-done, it was probably a migraine, but we need to watch ever so closely and at the first sign of a repeat performance – call. Don’t pass GO, don’t collect $200… CALL.
So, the weird day is done… And the weird life continues.
I want to be free of the wait for “the next thing”, and yet I choose to believe the wait is as purposeful as every other moment.
Tomorrow is a new day with new mercies.
Taking it moment by moment.
Thank you for walking this with us!

Chase still has a headache, but perked up in order to help with his evening shot.

Wait

As you sit at your computer, sit by your phone to read these words, we are waiting.

I hate waiting.

And yet, waiting is life and life is waiting. We wait for things to begin and wait for things to end. We wait in and for everything from the right person to marry to the right line in the grocery store. We curse it when it inconveniences us and bless it when it brings good news, but the one thing we can’t do is escape it. There is no express lane for the verdict of doctors. There is no easy button for life trials and ‘thorns in the flesh’.

Today, while we wait for Chase and maybe we hold our breath and say one more prayer as he drifts off to sleep, the truth is that Chase is one of many. How many people sit someplace waiting for life-changing news, life-stabilizing news?

Are you waiting?

Are you called to partner with someone who is waiting?

Today and always, we stand with you in the wait. You are not alone.

These things might be painful, but there is and will be beauty in them. There will be hope in them because God is good. And to this, we cling.

I wait for the Lord, my soul waits, and in his word I hope; my soul waits for the Lord more than watchmen for the morning, more than watchmen for the morning. Psalm 130:5-6

Moment by moment.

Breaking Down The MRI Results – VIDEO

We’ve now heard from all of Chase’s teams.

Here’s a little update with a breakdown of what happened with the MRI and what comes next.

And because I love you, I recorded a video instead of writing a blog. But don’t worry, I won’t leave my day job. xo

#MomentByMoment #ChaseAwayCancer