Monthly Archives: November 2013

Giving Thanks

Tonight, in the feast light, he eats…really, really eats!
They said his blood chemistries came back within normal limits, which means his body remembers how to use food after 15 months of mostly not.
The newest thing in a year of endless things for which we give thanks.
Moment by moment.

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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. :)

 

I Will Come Back To You

Chase has completed the ear portion of his time under anesthesia without complications. Our hope is that the procedure they did will help him hear better as he has continued to show signs of losing his hearing. He is still under anesthesia right now and has been moved to MRI. As we began earlier and he walked from the waiting room into pre-op, he turned back to Bob (who was staying in the waiting room to work) and said: ” Don’t worry, Daddy! I will come back to you!” That child…
Moment by moment.

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”