Category: Cancer

Do You Hear What I Hear?

Wires in his ears
Wires in his ears

I’ve written about Chase’s lack of hearing before.

The tiny room…

The sounds I can hear that he doesn’t…

The frustration in our home as he calls and calls desperately across the house, never once hearing us answer…

Since his doctors surgically cleaned out his ears, the intense frustration has seemed to improve a little.  Now, he seems to be able to hear a voice from across the room, but perhaps that’s just wishful thinking on our parts.  After all, we know the collateral damage we signed on for when we started this journey.

Stimulating his hearing through his skull - fearful and wonderful
Stimulating his hearing through his skull – fearful and wonderful

And yet…

Today, as we wrapped up the audiology exam, she sat down and smiled: “I don’t usually get to tell people this, as it often goes in the other direction, but…his hearing has actually improved!”  The procedure performed in November (when he was under anesthesia for his MRI) was successful and his hearing is within normal ranges in several areas.  His high frequency hearing is still classified as “poor“, but even that has improved from the “unresponsive” conclusion on his last test.

Even as we both celebrate these results and wonder about the results in six months time, I am reminded again of these words…

Chase doesn’t need perfect hearing to hear the voice of God.

Thankful.

Moment by moment.

He feared the giant headphones and we told him that he looked like an airplane pilot :)
He feared the giant headphones and we told him that he looked like an airplane pilot 🙂

Deaccessed

Today was our second day of post-chemo follow up.  Chase has made a lot of progress and today turned into a very big day when his neuro-oncologist suggested that Chase may have “weaned” far enough off of his IV nutrition (down to 10 hours) and may actually be eating enough to stop using the IV bag altogether.

So today, for the very first time ever, Chase was “deaccessed” (the needle and dressing were removed from the port in his chest) while in the hospital and he walked away a free man!  He has not been without visible “hardware” in either his chest, arm, or hand since August of 2012 (other than a very brief 24 hours in July when he got to go swimming).  This is a big step and he is very excited!  Without the bag, he won’t have a needle taped to his chest and he will be able to swim, or take a bath, or go places without a “crash kit” on hand.  Please pray for Chase as his body transitions back to sustaining itself without assistance.   He will continue to have weekly labs taken to monitor his progress for at least the first few weeks.  And so, we move forward…

Moment by moment.

A needle-free chest pockmarked with central line scars. Beautiful battle wounds.
A needle-free chest pockmarked with central line scars. Beautiful battle wounds.

Clear

Clear.  Clear!  The MRI was clear!!

Brain…clear.  Spine…clear.  And the areas of fluid they’ve been watching?  …smaller!

Chase’s doctor said that the images were perfect and exactly what they’d hoped for.

It’s official.  Chase has finished his chemo therapy with no signs of cancer.

How I wish his scans would stay like this forever!  They may, and they may not… but either way, they are clear right now and in that we have so much joy.

Last night, I wrote about a second day of testing.  This has now been moved to next week due to some scheduling issues and the post-procedure counsel of the ENT.

We’d so appreciate continued prayer for Chase, especially tonight as it’s been a long day and the anesthesia was rough.  He’s having significant ear pain – a common side effect of the procedure – which has him screaming at anything pitched over a whisper in the house right now.  We have been told that it will pass in the next 24 hours and we pray that’s true.

Thank you for coming on this amazing journey with us.  God is good.

Moment by moment.

Chase resting at home tonight
Chase resting at home tonight
I couldn't resist adding this picture as well. It takes a pretty amazing dad to escort his child into the OR *and* rock the outfit while doing it. :)
I couldn’t resist adding this picture as well. It takes a pretty amazing dad to escort his child into the OR *and* rock the outfit while doing it. 🙂

 

Of Tests, Hot Chocolate, and Blessings

My apologies for the recent lack of blog updates.  I will get to the last few weeks another time.  For now I’d like to update on this week alone.

In the morning, Chase begins the first of two full days of tests and appointments with his doctors for post-chemo evaluation.  We’d greatly appreciate prayer, especially in regards to the full brain and spine MRI and the potential ear surgery which will collectively have him under anesthesia for 2-3 hours tomorrow afternoon.

We consider ourselves incredibly blessed to have made it to this point… to even be discussing a “post chemo” life… what a gift!

Right now, the snow is falling outside and because many aspects of Chase’s traumatized brain are still breathtakingly sharp, he reminded me that I promised -last year- hot chocolate and “The Polar Express” when the first snow fell.  So the siblings lie snuggled on couches in the dark, gleefully starting the holiday season too early.  But really?  Can one ever start too early?  It’s the time that we set aside to be thankful…for Jesus, for love, for life.  There is no time limit on those things.  And while a hot drink and Christmas movie hardly seem focused on such great themes, the very opening sounds and smells threw me back in time a year and the radiation burns and the cancerous spinal taps and the crushing knowledge that the season of 2012 might be the last.

There will never not be apprehension about all the tests and what we’ll hear on days like tomorrow, but right now, in this moment, I’m reminded that we’re incredibly blessed.

Moment by moment.

In the dark, a bald head snuggles in front of "The Polar Express"
In the dark, a bald head snuggles in front of “The Polar Express”

Come With Us: The Last Spinal Tap

I’ve written many times about what it looks like to be with Chase as he goes into surgery, and now, come with us, if you will…

The pre-op and the conversations, the moment they take him away from us, the post-op exams and the deep, deep sleep…  And through it all, Chase’s incredible bravery.

Come with us for the 16th and last spinal tap*…

Moment by moment.

[music: Sleeping at Last, “Next To Me“]

*took place, Monday, October 14, 2013

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