Imagine the Grace

Photo courtesy of Jessicafm

“You know it’s okay to say this really stinks, right?”

Bob and I have heard variations on this question many, many times in the last two weeks.  Yes, we really, really do know that this stinks.  We weep and are often overwhelmed, but we marvel ourselves at the peace we feel.

I was recently made aware of a wonderful thought from Elisabeth Elliot that perfectly describes our feeling.  She (our Chase Stratton Elliot’s great-great aunt) wrote this after losing her second husband to cancer.  I read it in this moment not as pertaining to the loss of Chase, but as the loss of what could have been for Chase:

“It often happens that those whose loss is greatest receive the greatest share of grace, mercy, and peace. This does not mean that they never cry, of course. But they do not collapse. Those who only watch and pray and try to put themselves in the place of the bereaved find it almost unendurable. Sometimes they weep uncontrollably, for their imaginations never include the grace.” (The Path of Loneliness)

Oh dear ones, when you think of us, imagine the grace!  It is beyond your (and even our) wildest imaginations.

As of today, we know that Chase is scheduled to begin treatment by the end of the week.  Please pray for us to continue in a moment-by-moment walk with Jesus.

“But safety, as the Cross shows, does not exclude suffering…trust in those strong arms means that even our suffering is under control. We are not doomed to meaninglessness. A loving Purpose is behind it all, a great tenderness even in the fierceness.”  (The Path of Loneliness)

“I wait for the Lord, my soul waits, and in his word I hope; my soul waits for the Lord more than watchmen for the morning…”  Psalm 130:5-6 (ESV)

 

Weekend Update

A tiny slice of the efamily weekend in pictures…

A quality man, who can find?  He can simultaneously hold a baby and play frisbee with the other kids … like a pro.

 Darcy Girl…my baby is setting up to be in first grade! 

My firstborn tent, er, son, Aidan…who insisted on “wearing” the castle tent and chasing Chase with almost no visual.  Ah, those college scholarships…

I wish I could explain the bowl scraper, but I just can’t, so I won’t even try.  It’s Chase …

“What’s with this green carpet?”

There might have been some maternal manipulation in play here.  What can I say?  I’m an absolute sucker for a good bowl scraper.

And the winning weekend image award goes to … Grandpa and his rampant misuse of the nerf guns!

Hope your weekend was as colorful as ours!

The Face: Vintage 10 Months

“The Face”…slightly out of focus

Life is so, so precious. Recently on efamily, we’ve been working through some really heavy things and I just wanted to take a moment to celebrate a lighter event.  Our little Karsten Robert Charles, aka: “The Face” hit the grand old age of 10 months! (well, it was a couple days ago and his grand old mother did a little grand old procrastinating, but still…!)

The moment he realized that somebody left a Reese’s peanut butter cup in the stroller (see the drool? he gets that from his father, I’m sure…)

What a joyous 10 months, our little Karsten Lion!  May we be blessed with many, many more!

Of Steroids And Washclothes

Chase flaunting both his cool scar and the awesome view

A quick catch up (and by “quick”, I mean “probably not“) …

Chase is home! 

Chase leaving the hospital in the wagon

Well, home after a fashion … We have moved into my parents house for the first week (read: pray for my parents) so that we can have around the clock, one on one care for Chase.  Why?  Because he’s an active 2 year old boy on steroids, with 40+ stitches in his head, weak muscle coordination, and no center of gravity.  Good times.

On that same subject, Chase had his final steroid yesterday…(audible sigh of relief)

We had a wonderful (albeit long) meeting with the oncology team today.  Without gushing and going into a lot of cancer jargon, let me just say…we are very glad to be working with them.

We were also informed today that Chase’s kidneys are clear for now.  This is the thing with AT/RT: it usually just hits the brain and spinal area (yes, I said “just“), but there is the chance that it can attack the kidneys too…which happens most often in the genetic version of the disease. (yes, I said “genetic“…so yes, our other children could get this).  Therefore, as you can imagine, clear kidneys are a huge praise!  The tumor will now be flown to Philadelphia where it gets to meet the only person in the world who studies the genetic component of AT/RT.

First post-op steps with the nurse

As soon as Chase gets cleared post-surgery, he will begin a very aggressive eradication process, the name of which sounds like a great title for the newest spy action movie.

Chase is doing so well!  His wound had now healed to the “itch” level and it’s driving him nuts.  However, in his brain, covering it with a washcloth helps.  So we are hearing the  phrase “I nee uh washclaf” a hundred times a day and he spends most of his waking (and sleeping) hours with a dry washcloth draped over his cranium.

Chase and his “washclaf”

Dear ones, please know this … As you may read this lighter and even joking tone to some of what I say here: cancer is deadly serious.  I am not joking about cancer.  Bob and I are finding joy in our son and his rarities on this long (and what will often be dark) journey.

I think this wraps up all the information I’ve been meaning to share with you. 

As always, thank you so much for all your love, encouragement and prayers.  They mean so much to us.

Chase with this siblings, cousins, and pilfered medical supplies yesterday afternoon

The Other Shoe

What do you do when the thing you most feared is suddenly your reality?

Today we got the results of the pathology report, and it doesn’t look good.  Chase has an atypical teratoid/rhabdoid tumor (AT/RT), which is a very rare kind of cancer (rare = about 30 new cases per year).  Did we really think that Chase was anything other than rare?

The neurosurgeon noticed, on Chase’s original MRI scan, that there was some light-colored shading on his spinal column, which has now been interpreted as the tumor spreading.

It seems like the most likely course of action will be a 51-54 week regiment of chemotherapy and radiation, during which time he will have a treatment every 3 or so weeks in the hospital.

This is hard news to try to process.  Am I ready to watch my child go through this?  Do I trust that God is sovereign, even over an aggressive malignant tumor?  The words (and melody) of a song by Mark Altrogge has been going through my mind today:

Whatever my God ordains is right
In His love I am abiding
I will be still in all He does
And follow where He is guiding
He is my God, though dark my road
He holds me that I shall not fall
And so to Him I leave it all.

Here’s a clip of the song with this verse:

What this looks like, only God knows, but what we do know is that God IS sovereign, and while the tumor is a tragic physical manifestation of the fallenness of mankind, the child is a beautiful manifestation of the image of God, and in this child we have joy.