Touch Your Nose

Because Chase’s cancer was in his brain, he goes through a series of “games” with almost every doctor he sees…
“Touch your nose”…
“Touch my finger”…
“Squeeze my hands”…
“Push me as hard as you can”…

All small exercises in game form to help understand his cognitive function.
Yesterday, Chase had an appointment with his neurosurgeon and it was apparent from the first moments of interaction that Chase was in rare form (even for Chase).
He solidly refused to even think about playing any games until the doctor -an amazingly sweet man who seems to understand Chase’s energy- said “I bet you can’t…”. Ah, Chase’s motivational love-language: The Dare.
When asked to play “Touch my finger“, he insisted on alternating his hands so that he’d touch his nose with his left hand and the doctor’s finger with his right hand (foiling the attempted exam intent of using the same hand for both nose and finger). When his doctor kindly suggested that he switch hands (thereby participating in the one handed goal of the game), Chase simply switched hands and the right hand went to the nose while the left went to the finger.
(How I wish I had a video of the entire exchange… It was hysterical!)
That any cognitive neurological conclusions were reached yesterday is a miracle to me, but it was apparent that Chase had no lack of stubborn ingenuity and the doctor, no lack of humor. One needs that sort of perspective when confronted with a bald three year old who, when asked to touch his own nose, calmly retorts: “No, you touch your nose!

The final word on the MRI continues to be good. We did discuss some spots on the images which are small leaks – another side effect of Chase’s many treatments. If the veins continue to leak and bleed in his brain, there may someday be complications (more seizures, surgery to remove), but for now, Chase is fine and his doctors will just continue to watch the areas in question.

Never a dull… 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.