Category: Uncategorized

Last year, I had the family look back on 2012 in their own words.  This year, with a concussion-induced writing break and the first part of January already slipping away, I asked them to look forward.  As I reflect, it actually seems more appropriate.  2012 ended in a way that we needed to sit and process.  2013 ended on a decidedly different note – one that has caused us to look forward with great expectancy.  So here we are in our own words…

Darcy (7):  “This year, I want to go back to our old house.”  [Since Chase’s diagnosis, we have lived with grandparents for immediate and constant assistance – a thing we could not do without –  but our kids miss our condo, and in truth, “our old house”  often means “our old life”.  How I wish I could snap my fingers and give that to them.]

Aidan (5):  “This year, I want to go to Lake Geneva!”  [I’m pretty sure this is the first thing that popped into his head, but it’s his story and he’s sticking to it.]

Chase (4):  “This year, I just want for to have no more cancer and The Polar Express.”  [I don’t think there is anything I could say to elaborate on this.]

Karsten (2):  “I want to sit on my bottom!”  [At the time I asked Karsten about his 2014 plans, he’d just been ordered to “sit on his bottom” at the dinner table because standing on his chair to eat his soup was deemed inappropriate.  In all fairness to him, that’s an excellent goal for 2014 and a much needed one.]

Bob: My thoughts on 2014 center around motion and growth.  We’ve been stagnated under the immediate and the urgent for so long.  Now, we have this chance to move…to be in forward motion, if you will, away from the treatment and the upheaval and to be out from under all of that.  I look forward to 2014 being a season of moving forward and growing in many facets.

Ellie:  In a small way, I echo Bob.  My hope for 2014 is that we find our place.  We have been wanderers in the treatment phase for so long – I’ve written a few times about the urgency that barely allows you to make eye contact with life, and now, we’ve been granted the great gift of a reprieve.  It’s terrifying to stop fighting and live, but it’s amazing to stop fighting and live.  We’ve been given this gift of life – now we actively seek God for our place in it and the courage to assume what He has for us when He makes it clear.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  Jeremiah 29:11

With great hope… Moment by moment.

I still remember the final push and the rush of pain and relief as the doctor held up the tiny, red child and proclaimed him a boy…and then, as they laid him on my chest, he marveled aloud to the room that the seconds-old child was holding his head by himself.  Strength.

In that moment, I held my Chase Stratton Elliot for the first time.  Named after his grandmothers, his great-uncle Jim, and the burden prayer that he would run after God, this child of great struggle and the unexpected came; the news of his life shocking us only three months after Aidan.

I still remember walking down the hall of the radiation center and stepping into the room on that last day, my arms full with a too white child too light for his long bones.  The anesthesiologist stepped to my side and as the milky syringe emptied into the central line, my baby chanted “I’m so brave, I’m so brave, I’m so brave…” until he sighed and collapsed in a deep sleep on my shoulder.  Strength.

In that moment, I held my Chase Stratton Elliot for yet another time – still my child of great struggle and the unexpected.  I held him and wondered if this would be the last December 12th that he’d be in my arms.

Now it’s December 12th again and my darling child of struggle is still in my arms!  Joy.

He struggles with the world even now, but his stubborn, tenacious, beat-the-odds, stare-it-down, never-say-die, don’t-mess, you-and-what-army spirit is what makes him our precious Chase.

The first time we sat across the table and heard the awfulness of this disease, I asked the doctors what was ahead and one smiled with great sympathy and said: “Let’s just start this fight, and then we’ll get him through radiation, and then we’ll hopefully get him to age three, and then four, and then…”

He saw age three, he conquered age three, and now he’s FOUR.

Moment by moment.

I believe that I shall look upon the goodness of the Lord in the land of the living! Psalm 27:13

 

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.

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.