moment by moment – Page 6 – CHASE AWAY CANCER

Of Dirty Dishes…

One late night this week, it occurred to me that my kitchen might need a little attention…

Actually, I got the idea after my kitchen practically jumped out and attacked me.

Oh my word, I’m cringing even looking at it… And I’m cringing even more, because, I took this second picture significantly into the cleaning process and considered posting it instead. I secretly wanted this to be the messy kitchen you saw that might possibly promote me to an organized-neat-freak-whose-house-is-so-clean-at-all-times-that-the-tiniest-mess-is-a-disaster in your mind. I actually considered downplaying the mess to somehow make me look better.

If I’m honest with myself and with you, my house is messy far more than I’d like and I have proof of this pattern, because the other day, when I cleaned just for the sake of general responsibility and health, Darcy walked in and gasped: “Yay! Is Grammie coming today?” [cue the psychological damage, please…]

When we first got married, a very wise woman gave me advice on carving out time and making priorities and our many conversations would go like this: I’d ask “But what about this good thing? …or this good? …or that better?” And she’d quietly smile and knowingly state:

“You’re saying ‘no‘ to one thing to say ‘yes‘ to another – your ‘no‘ to that social commitment is a ‘yes‘ to the commitment of your relationship and making time for it – the best thing.”

I love this idea and I think it bends out into my home life and family life too.

When one of my children needs extra counsel and love, when there’s a writing deadline, when a 4th grade landform, a 1st grade corn celebration party (for real, it’s a thing), and a kindergartener’s reading homework all coincide – and they all need to be addressed at the same time, something has to go so I can keep breathing, and that something (for me) is usually the dishes.

One of my favorite phrases is: “There are only so many hills you can die on and this shouldn’t be one…” (Seriously, I’ve long considered a needlepoint or canvas…) And so, after what feels like a defeated week, I’m posting a picture of my dirty dishes. And I hope they encourage you! (weird, right?)

Because sometimes, whether in casual conversations or on social media (particularly the latter), it’s easy for me to feel shame when I see the best and most polished in others’ lives and then I feel terrible for not being able to “do it all”.

For me, saying ‘yes‘ to my children, to my husband, even to something like writing, often means letting something like the dishes go for just a minute. (or, you know, two days…[double cringe] )

I promise, it doesn’t look like this all the time, and I definitely don’t want to hold up my dirty dishes as an example because each person’s “saying ‘no’ to say ‘yes’ moment” will look different, but for me, this is real, so I’m coming clean over the dirty today – this week, I said ‘yes‘ to my family…and the dishes took a little longer to get clean. Because most of the time, my life doesn’t wrap up all neatly like a pretty package…

And I need to remember to take even the dishes…moment by moment.

“Teach us to realize the brevity of life, so that we may grow in wisdom.” Ps. 90:12 (NLT)

The Good, The Bad, And The Same

Pre-procedure game of "Got Your Nose" was pretty epic... — Pre-procedure game of “Got Your Nose” was pretty epic…

Monday

He lay on the pre-op bed and absolutely knocked us over:

“I will do a good job and I will be fine because I’m a survivor, okay?”

The medicine kicked in and he asked me to text his home healthcare nurse and let her know he’d been brave for the needle in his arm. And then, with a sigh, he passed into oblivion again for yet another MRI. I wish I could tell you the number but I’ve lost track…his 30th? …40th? Yeah, there have been a lot.

"Tell Miss Joanna I'm doing it, okay? I give you permission to tell her." -Chase — “Tell Miss Joanna I’m doing it, okay? I give you permission to tell her.” -Chase

Tuesday

Despite a brief meeting with Chase’s neurosurgeon on Monday afternoon, the final word came, as it always does, from neuro-oncology regarding the MRI. The cysts appear to have grown again, but Chase’s spine looks clear, his condition is beautifully stable, he isn’t having seizures, and so, we continue to wait. If the cysts continue to grow, he may need a biopsy or some other surgical intervention, but it is not the right time for those things. And so we wait some more…

This is bad because nothing should be growing.

This is good because nothing is growing fast or harmfully.

This is the same because everything is growing marginally as they has been all along and we’re pretty much exactly where we were three months ago: watching, waiting, and scheduling another MRI in a few more months.

Out of the tube and awake...barely. — Out of the tube and awake…barely.

And as I write these things and feel a little weary as we start the fourth year on this AT/RT road, I’m mentally checking myself for complaining about a living, breathing son who probably shouldn’t have survived more than six months, some three years ago. The scan results comes down to what they always do: perspective.

Stuck in the wait a little while longer and choosing joy… moment by moment.

Hey, you've got to stay in shape if you're going to give out warm hugs all the time... ;) — Blood pressure cuff + stick arms … If anything can handle it, Dr. Ewoldt can 😉

Three Years And A Letter

This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. Joshua 1:9

Friday, July 31, 2015

My Chasey-Bear,

How very far you’ve come! When they first put a name to the giant ball inside your head, the nightmare of it spreading through your skull and down your back, I read that “long term survival” was 3-5 years, and now, here you are: at the three year mark.

I know you don’t like me to even speak about the hospital on the majority of days and it’s okay, we can mostly play on your terms, but today is different. This day in your short history, you were on nobody’s terms and only God himself knew what came next as we learned the unfolding: that you would carry a terminal illness with you the rest of your breath here on earth.

I still remember how small you looked in that first ER bed, how confused your eyes were, and how rosy your cheeks got from all the steroids they pumped in as they tried to save you from yourself before the damage became too great.

I remember holding the oxygen mask to your face and thinking it couldn’t really be happening, and if we were in a movie, that would have been the moment for slow motion and an audible heart beat. Because sometimes life feels like it’s slowly tearing apart.

We’ve given you over to Jesus more times than I can count and held you close even more time than that. Yet here you are, still on your journey, standing smack in the middle of your life road, laughing at anything barreling down on you – and how we love you for your fierce, “you-and-what-army” self.

I know these days turned into years have not been easy for you – and I know “not been easy” is a gross understatement.

None of us know how much further this road continues, but I know if it’s with you – as I’ve known from the first time you kicked inside of me – it will never be dull. And so we’ll just keep at it as we have tried to all along… in His grace, moment by moment.

All our love, my darling survivor,

Daddy and Mama

Your grace abounds in deepest waters. Your sovereign hand will be my guide.
Where feet may fail and fear surrounds me, You’ve never failed and You won’t start now. So I will call upon Your name and keep my eyes above the waves when oceans rise. My soul will rest in Your embrace, for I am Yours and You are mine. ~Oceans, Hillsong United

The Second Year

Tuesday, July 31, 2012…

Two Years… Two whole years since the early morning panic gave way to a living nightmare on the day Chase was diagnosed.

What struck me most as I looked through the pictures and memories is that life can feel complicated now, and yet, as I look back over the last year and see such crazy hard times, I realize that I’m apt to forget what it looked like in the shadow of whatever the here and now happens to hold. I can tend to see Chase’s deficits and struggles and not realize how healthy and robust he is now compared to the emaciated waif that was. The truth is that much has changed. The truth is also that there are many uncertainties ahead. The truth is that God’s goodness and faithfulness to us have never and will never change. And Chase is still living and breathing with us two whole years later.

We’ve spent many days listening to Rend Collective’s newest album. Our family’s favorite song is “My Lighthouse” and I truly can’t think of better words to sum the year…the two years…or, the lifetime:

In my wrestling and in my doubts
In my failures You won’t walk out
Your great love will lead me through
You are the peace in my troubled sea

In the silence, You won’t let go
In my questions, Your truth will hold
Your great love will lead me through
You are the peace in my troubled sea

My Lighthouse, my lighthouse
Shining in the darkness, I will follow You
My Lighthouse, my Lighthouse
I will trust the promise,
You will carry me safe to shore
Safe to shore

I won’t fear what tomorrow brings
With each morning I’ll rise and sing
My God’s love will lead me through
You are the peace in my troubled sea

Fire before us, You’re the brightest
You will lead us through the storm

Even if we know nothing of what lies before us (and we don’t), we can look back and see the joy in so many ways.

Trusting He will lead us through the storm… moment by moment.

**Look back with us and find joy…**

Stable

In pre op waiting for the MRI to be available so Chase could proceed with anesthesia

After a very long day that included an inner ear procedure, waiting over an hour for the MRI, almost three hours under anesthesia, and a painful peripheral IV in the arm (instead of accessing Chase’s port), we received an early, unofficial word from the hospital last night: Chase’s MRI results were still being read, but there was no evidence of new tumor growth. However, there was still a question about the areas of fluid retention and cavernomas (effects of surgery and radiation)…

This morning, we received the second and final call. The official word is “stable” on all fronts!

There may have been some very minor changes to the cavernomas, but nothing of concern at this point and the areas of fluid are virtually unchanged. We will have the chance to view the MRI and discuss all of this more in depth next week with Chase’s neuro-oncologist and his neurosurgeon in his routine follow ups.

Taking vitals in post op recovery - and getting to eat for the first time in 9 hours! — Taking vitals in post op recovery – and getting to eat for the first time in 9 hours!

Praising God in awe. Some days, I still can’t believe Chase has survived 21 months after an advanced AT/RT diagnosis.

Thank you again for your prayer and encouragement as we take this…

Moment by moment.

In the car, on the way home. A long day for a very brave boy.