Jonah post Monster Jam 2015 post Culver's Chocolate Custard
Here I sit Sunday night next to Jonah looking through photos to post and laughing about memories. For those reading this that don't know Jonah well he's a kid who lives life to the fullest, he's all out all the time and a constantly happy kid. We know we're in for a rollercoaster in the days, weeks and months ahead. I look forward to days like the one captured above where I surprised him with a father son day out at Monster Jam for just the two of us.
I've gotten some questions about exactly what's going on, so as a non-medical professional writing to mostly non-medical professionals I'll try... Jonah has Medulloblastoma, a malignant brain tumor that has metastasized throughout the brain and spinal cord. He underwent was a posterior fossa resection which is surgery to remove as much of the primary tumor as they could. Specific course of oncological treatment, which is likely to include both chemotherapy and radiation, is dependent upon pathology results which we won't get until Tuesday at the earliest.
Current focus of care is on healing from the cranial surgery. He has lots of swelling of the brain and as a result hydrocephalus, or excess spinal fluid build up. To manager that there is an external ventricular drain in place to relieve the pressure.
While he's responsive to stimuli, he has not woken up from the surgery yet despite it having finishing almost 48 hours ago. As a result, he is still intubated and on a ventilator. Neither MRI nor CT Scans point to a clear reason why so he's undergoing an EEG. We should know more tomorrow and will update as we do.
We continue to be overwhelmed by the massive outpouring of support for Jonah and our family. We can't thank our friends enough for the prayer vigils, visits, entertaining of our other kids and countless words of encouragement and support. We feel so loved and please know that you are so loved by us.
Over the years we've taught our kids the hymn It Is Well with My Soul which they call "The Sad Man Song" as we've told them the story of Horatio Spafford who wrote it. We even have the picture below right next to the dinner table in our house, the photo of which our friend Keli sent us this evening after she put all our kids to bed.
Little did we know what an encouragement it would be to us when our "sorrows like sea billows roll."
It Is Well With My Soul
When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, (it is well),
With my soul, (with my soul)
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life,
Thou wilt whisper Thy peace to my soul.
But Lord, 'tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul.
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul!
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