Author: Ellie

What a difference two days makes!

Chase is doing unbelievably well. The neurologist laughed incredulously when, after testing Chase’s right hand strength with a high five, Chase said (extended right hand) “Yes, now can you give ME a high five?”

Every moment is a different emotion, one minute up, the next down, but always -much like Saturday’s thunderstorm- strong, inevitable, and a breath-taking display of God’s power.
I turn into a giant ball of stress every time I think of what is yet to come in regards to treatment options and our family life. I feel numb every time I consider this being life-threatening. I feel crazed from dealing with a 2 year old boy on continuous steroids. I wept last night as Chasey lay in his bed and sang the words of one of his favorite songs…”Thou will keep me in perfect peace whose mind is stayed on Thee.” (Isaiah 26:13). And as crazy as it sounds, I laugh. Life with Chase IS comedy. Anyone who regularly reads efamily knows that.
For instance, he loved the Cars movie before he was admitted, but since being admitted, he has obsessed, and he has been cycling between “Cars: Radiator Springs” and “Carstoons with Finn McMissile” almost non stop. The attending neurosurgeon joked that he removed the “Cars” part of the brain, but no dice…both Bob and I have it completely memorized.
Chase also loves to ride the elevator now and every time they wheel his bed into it, he says “To the moon!” or “To infinity and beyond!”
Incidentally, the elevators here have little sound buttons (cars, trucks, trains) and Chase’s grandpa is quite smitten…word reached us that the “door open” button may have been pressed the other day in order to play in the elevator. I’m not naming names … This is probably just a rumor.
We also laugh with Chase about his “baseball head” – with the 40+ neat stitches visible across his cranium.
As I finish typing this, the intercom just announced a “Code Red” on a lower floor and I’m reminded again how moment by moment I need that grace.
I’m so thankful for God’s grace and the joy of laughter along the way…even with a malignant brain tumor.
There is talk of Chase being discharged soon, so stay tuned …

Crabby Day is coming to a close…and we survived!! We have high hopes that tomorrow will be even better.

Today was an exciting and encouraging day. We were able to move out of the PICU and 2-3 hours of continuous EEG monitoring showed NO subclinical seizures!

The swelling is …amazing. I’ve never seen anything like it, but the doctors assure us that he looks great.  At this time, his vitals and reflexes are stellar. The boy had something large enough to throw out the first pitch at Wrigley removed from his head, and they’ve assured me that within the next few days, he’ll be up and managing his pain with Tylenol.

If the amazing human body didn’t impress you before, I hope it does now – Fearfully and wonderfully indeed. (Psalm 139)

I’ve been thinking through the lyrics to a favorite song a lot recently. Today was incredibly encouraging and tomorrow may not be, but I think that if I could embody where I mentally and emotionally desire to be, I would live these words:

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

Whatever my God ordains is right
He never will deceive me
He leads me by the proper path
I know He will not leave me
I take content, what He has sent
His hand can turn my griefs away
And patiently I wait His day

Whatever my God ordains is right
Here shall my stand be taken
Though sorrow, or need, or death be mine
Yet I am not forsaken
My Father’s care circles me there
He holds me that I shall not fall
And so to Him I leave it all

Whatever my God ordains is right
Though now this cup in drinking
Bitter it seems to my faint heart
I take it all unshrinking
My God is true, each morn anew
Sweet comfort yet shall fill my heart
And pain and sorrow shall depart

© 2007 Sovereign Grace Praise (BMI)

Yesterday was a very long and difficult day, yet we’ve been told* that today, the official day after surgery, is nicknamed “Crabby Day” because the after-effects of surgery (anesthetic, swelling) are the worst.
*by our “brain tumor coordinator”…imagine a wedding coordinator, but substitute the white dress and flowers for a brain tumor and OR privileges.

This is a concept that’s hard to get my head around as my life paradigm doesn’t include a day thats actually worse than brain surgery, knowledge of malignancy/spreading, and taking turns laying on the PICU bed beside our son to keep him from thrashing or touching an incision wound that stretches hairline to hairline.

How do we even begin to wrap our minds around this?

Standing by Chase’s bed late last night, our dear friend and pastor wisely threw the lifeline.
Moment by moment grace.
Chase is crying right now, so we comfort him, and then the doctor comes in, so we speak to him. There is no tomorrow or next week or six months from now…just this moment and the grace God overwhelmingly supplies. And with that grace, often great joy. The smallest things become incredible victories.

Yesterday was a long and difficult day, yet our son emerged from fairly major brain surgery breathing on his own and tried to get up and stand/walk within a couple hours post op. (he also punched several nurses, but I hesitate to list “punching medical staff” as a serious cause for joy)

Yesterday was a long and difficult day, yet the area of blood at the front of the head seen in the post op CT scan -that worried the surgical team and led to discussions of needing to go back into surgery- stayed the same and even slightly decreased in a CT scan a few hours later and re-opening the head was no longer necessary at the time.

Yesterday was a long and difficult day, but we were overwhelmed with the love and support on every side, both in person and via texts, emails and social media. Truly a perfect blend of crying when we needed to cry and laughing when we needed to laugh (like the moment Chase’s grandfather assured a room full of people that he was fine and then tried to exit the room via the bathroom…though, in his defense, the hospital did put the bathroom door next to the exit door…)

And last, in this very moment, yesterday was a long and difficult day, but as I sit here writing in the pre-dawn hours of “Crabby Day”, Chase’s overnight nurse just informed me that he could have something for the pain if he wanted…because he’s had (and needed!) no pain management drugs since shortly after post op.

I guess what I’m trying to say is that words like “malignant”, and “spreading”, and “chemo” are all too big to understand in this moment, but that’s okay, because God is all over that, and I can just hold my son.

Grace.

Moment by moment…

“We will do surgery in the morning.”

It’s ironic how one sentence can bring such relief and fear all at the same time.
First thing tomorrow, Chase goes into surgery for an unknown duration.  In the words of his chief neurosurgeon …”As long as it takes.”

Later this afternoon while in an EEG, they discovered that Chase was having multiple “sub-clinical” seizures.  Meaning that his brain is seizing without any outward symptoms.  A team of neurologists watched him have a seizure while eating a french fry.  (warning: inappropriately timed humor ahead)  I’m just saying, if you have to have a seizure, you should definitely be able to eat french fries.

Because of his need for continuous monitoring, he has been moved to the PICU.  Every time there is a status change, and sometimes even more often than that, my heart sinks and I’m in a place of fear over faith.  I’m so very thankful for the moment by moment grace that I/we are being given.

Malignant or benign, removing all or some, what will be lost not to be regained, and what will the hours/days/weeks after the surgery hold?  All of these things are issues they can only discuss options on…not to be more fully known until after the surgery.
In moments of such great unknown, we feel so alone, and yet, as a friend (and mother of a child who survived heart surgeries) reminded me – sometimes that loneliness is good because it reminds you that all you have is Christ and that’s all you really need.

“I stand upon the mount of God with sunlight in my soul; I hear the storms and vales beneath, I heat the thunders role.  But I am calm with Thee, my God, beneath these glorious skies; and to the height on which I stand, no storms, no clouds can rise.  O, this is life!  O this is joy, my God, to find Thee so: They face to see, Thy voice to hear, and all Thy love to know.” Horatius Bonar, Scottish minister who returned five young children to this same God