Tag Archives: MRI

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…

Placing special markers on his spine

Placing special markers on his spine

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 ;)

Marking A Year Of Another Kind

Bob and Chase preparing for the MRI - Thursday, August 14, 2014

Bob and Chase preparing for the MRI – Thursday, August 14, 2014

We’re supposed to “throw back” on Thursdays and “flash back” on Fridays and today is yet another date to mark.  Recently, we’ve had an awful lot of “one year ago”, “two years ago”, and so on, but sometimes the days are really long, the years are short and stressful, and rehearsing our previous survivals and God’s goodness to us in them is the only way to keep breathing.  And so, we go back…again.

One year ago today, I stood in the barren kitchen of a newly bought house (a seeming symbol of a fresh start), staring out at the view that would be my new back yard, and listening to the voice on the other end of the phone as my stomach dropped: “His spine looks clear and overall, his brain looks amazing, but…”

Those words kicked off a season of deep shadow that has been some of the most difficult waiting since his initial diagnosis.  The every six week scans, the waiting for growth… 

But today, we are stopping to mark and remember that Chase has now lived for one year, one whole year with his tumor bed growths/radiation effects/whatever they are and he’s lived as fully and well as ever he can.  We’re so thankful.

It’s incredibly frightening to write these words -about how well Chase is doing and how long he’s gone without an issue- when he’s about 72 hours away from another MRI.  But no matter what happens in this next week, today is a good day and we’ll take it one breath at a time in the… moment by moment.  

Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.” Deut. 31:8

Good

In pre-op with Mrs. Schneider

In pre-op with Mrs. Schneider

The doctor turned his head back to the computer screen on the desk and read out the official words from the final radiology report: “The MRI shows no evidence of new or progressive tumor.”

Let it sink in…  Good news.  The very best we could have hoped for!  These little growths, these that have so threatened for months now, these have showed themselves to almost surely be treatment effects.  What a strange cancer world we live in that where success is measured in not dying today and side effects can provoke a sigh of relief.  Oh, but what relief

In pre-op preparing for the scan: when the medicine works, it works quickly...one minute, up and playing, the next like this...

In pre-op preparing for the scan: when the medicine works, it works quickly…one minute, up and playing, the next like this…

And Chase?  He’s so funny… his hardest part was done yesterday when he woke up in post-op.  The needle was removed and he could eat and that was it.  And today, when we told him the news, he put his hands in his pockets, shrugged, and said “Oh. Good.” …as if he’d known all along.  This boy, he takes it as it comes.  And so will we.  Oh, and tonight, it comes good and great with no fresh cancer news, answered prayer, and an MRI that can wait for three whole months instead of six weeks.

Good news…  The very best we could have hoped for…

Moment by moment.

“This is the Lord‘s doing; it is marvelous in our eyes.  This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:23-24

Chase with Nurse Jo in post-op after his scan

Chase with Nurse Jo in post-op after his scan

Chase On His MRI [VIDEO]

The sun is only hinting pink when I feel another presence on the edge of the living room.  This is what he does, my early-rising boy… He wakes before it’s light, tip-toes out to wherever a parent can be found, and stands quietly, thumb in mouth, waiting for someone to see him and call him into the light.

Still rumpled and rosy from sleep, mismatched in his Lightning McQueen bottoms and a shirt that announces “I fight cancer. What’s your superpower?”, he jumps onto the couch and snuggles close.  His talk turns to the subject that has been plaguing him for about a week now: the upcoming MRI.

The questions come as they do every day; several times a day: …When is my MRI? Will there be ‘beeping’? Will I have a needle? Can I eat? Who will go with me? Will you come back to me?…  They come with heartbreaking regularity and the answers are always the same.  In a life that’s anything but predictable, he can at least rely on the same answers to these small questions that are so very big to him.

In a day, he’ll wait in pre-op for almost two hours after having gone nearly half a day without food or drink.  They’ll lull him and then hold a mask over his face while he lays on the threshold of the machine with no parents in sight to say “It’s okay, sweet boy.” And while he sleeps, they’ll put a needle in his arm to keep him hydrated and inject dyes and he’ll be in the machine for nearly two hours – the only blessing: he’ll be mercifully unconscious.

You hear from me on this subject early and often, and in the last part of the last year, it was often-er than not.  My words hardly change…we can’t, we must, we wonder, we shouldn’t, God is good.  Always.

So today, hear Chase.  He’s about 24 hours away from a big MRI and he’s scared.  He also wasn’t sold on the idea of a video until I promised him that he could hold his father’s tape measure.  This is what the early morning and late nights look like…the twisting mouth, the working to remember words, the thinking about mosquito bite scars on top of his skin rather than the potential of cancer growing under it.  He’s part boy, part wise far beyond his years, part broken by his treatment and tumor…and he’s all Chase.

Moment by moment.

*Note: His last words are “I want Mrs. Schneider to pray for me.”  That is the name of a dear friend who -because Bob needs to work tomorrow- will be accompanying us to the hospital so that I don’t have to be alone on MRI day.  Chase knows that while we can’t be with him, Janet and I will be praying for him in the waiting room while he’s in the MRI. 

Today

Today, I walked into a huge medical facility bay and stared down a gigantic white truck structure.  The MRI.   

Today, I watched my loving husband carry my darling son up into the structure as he spoke calmly and quietly, and Chase, red-faced and teary, clung to him and cried that he couldn’t…just couldn’t…do this right now.

Today, I stood in the bay as only one parent could go inside with Chase, and my heart ripped just a tiny bit at the sound of his screams and then it was silent but for the pounding of the machine.  And I would learn later that though he screamed in the room, the minute the scan started, he became peaceful and still and stayed still for the whole test.

Today, as I held my breath and prayed for Chase in the sound of the machine, a man came up and introduced himself – the husband of a beloved proton radiation nurse who had cared for Chase nearly two years prior – what a small, beautiful world it is some days.

Today, I watched Chun, the camera man (because yes, we have a camera crew here with us now – so much more on that some day soon) peer around the corner of the machine and flash me the “thumbs up” – Chase was okay and he was done.  He did it!

Today, Chase descended out of the gigantic white structure, held his arms out to me and shouted “Mom!  You came back to me!  I did it and I was SO brave!!”

Today, we – Bob, Chase, the camera crew, a friend from the hospital, and me – we all waited in quiet anticipation to talk to the neurosurgeon.

Today, we all stood in the small exam room to hear that the growths, though changed and grown a little more, are considered stable.

Today, we talked of movies, and keeping up with small children and their energy as Chase went through the paces of touching his nose and myriad of other normal things that may not always come easily to him and Dr. Alden knows this and watches out for him.

Today, we heard that we get to wait to look again until January and enjoy our holidays and that we don’t need to think about biopsies or treatments right now.

Today, we heard that January is most certainly a necessity and that at least one of the growing places on the MRI is still a concern.

Today, we talked about nobody having all the answers and how frustrating it is when we ask and the doctors long to reassure with decades of concrete research and can’t.

Today, we were reminded that if we see any, absolutely any changes in Chase, we need to report them immediately.

Today, we chafed against the wait again and found our spirits wanting.

Today, we were given the day, and we’ll take it…

…moment by moment.

“We were made to run through fields of forever, singing songs to our Savior and King.
So let us remember this life we’re living is just the beginning of this glorious unfolding.
We will watch and see and we will be amazed if we just keep on believing the story is so far from over and hold on to every promise God has made to us…
We’ll see the glorious unfolding.”

Steven Curtis Chapman

Waiting for the neurosurgeon and mildly questioning Dad's ability to assemble a Transformer...

Waiting for the neurosurgeon and mildly questioning Dad’s ability to assemble a Transformer…

Of Looking Back, Looking Forward, and Very Loud Noises

“I’m afraid, Mom.  It’s going to be really loud, isn’t it?”  Chase, cuddled on the couch this chill December afternoon, voices his worries… 

Three quarters of a century ago today, terrible things happened half a world away and boats sank and people died and the country went to war again.  December 7.

Six years ago, late in the evening, as the sounds of the Christmas music barely faded in the halls of the church, I rushed to the hospital and Aidan was born and there was joy and a new baby son.  December 7.

And now, we sit on the couch under the shadow of the almost-winter clouds and there’s another shadow too.  Tomorrow comes the MRI and we sit and talk because today, on December 7 – day of all sorts of remembrance – we sit and look ahead and not back because tomorrow they’ll peer inside his white head again and see if there’s been any change in six weeks.

It’s poetic and strange how life weaves the beauty and pain in every memory of each moment and they’re all mixed together in a life symphony that requires unending grace.

Chase is scared and rightfully so.  Tomorrow will mark his first “awake” MRI in two years.  It’ll be mercifully short, but for 5-10 minutes, he will have to face one of his worst fears.  The noise.  It will surround him and he knows it and he’s frightened.  He can’t escape it and this child who is never still must lay perfectly quiet in his terror for 5-10 minutes or an eternity – whichever comes first – yet another time in his little cancer life when the only way out is through.  And how our hearts wish to cover him from this, but we cannot.   So, through it, he goes.  And he says “Jesus will be with me…and Daddy too.

As you think of Chase tonight and tomorrow, will you please pray for him?  Pray for peace to surround him as he goes into this very hard place and does this very hard thing?  …and then, pray for us as our challenge comes moments after the MRI when we speak and decide over the pictures with his neurosurgeon.

Moment by moment…

“You keep him in perfect peace whose mind is stayed on you, because he trusts in you.” Isaiah 26:3

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Stable

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

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)…

Removing the painful IV

Removing the painful IV

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.

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

Open Hands

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The shadow has descended again and I’ve found myself unable to write because of it.  Three whole months have passed like the snap of a finger and once again, we stand in front of the two doors: the next MRI is in less than 48 hours.

Technically, the shadow of relapse is always with us, but we feel it ever so strongly the week before the MRI.  I wasn’t going to write because I’ve had no words -only fears and fighting fears- and I’ve wanted to be silent in my thoughts and prayers until after the results are known.  However, today, I was reminded to open my hands.  To relinquish again the dread of the unknown to the One who knows.

So, tonight, I finally sit and write.  I still fear much and fight the fear, but today, I opened by hands – a thing I haven’t done in too long.  I needed this reminder that Chase is not ours to keep.  In fact, none of our precious littles are.  They are our entrusted treasures and we are their stewards.  We’ve gathered them around us in front of the two doors and we wait… with open hands.

Moment by moment. 

The earth is the Lord’s, and everything in it, the world, and all who live in it.  Psalm 24:1 [NIV]

Six Week Joy

Chase’s cancer treatment calls for a sixth week evaluation.

It’s hard to wrap my head around having had six straight weeks of chemo already.
We spoke with the research fellow on Chase’s team yesterday and the preliminary look at his 6 week MRI showed no new cancer growth (a very real concern with an aggressive, malignant cancer) and the existing areas of cancer to be slightly decreased.

JOY.

We won’t know the full impact of these findings until after they are reviewed (probably next week) by all the relevant specialties (oncology, radiology, neurology, etc), but we are so encouraged even by what we have already heard… The chemo is working.

JOY.

I often close my thoughts with this, as it never ceases to be less true to us:

We don’t know what lies ahead, but we continue as we have…

MOMENT BY MOMENT.

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