Spring EEG prep
April 11, 2014
We sat in the room for almost two hours and dialogued on how the brain works. Chase fell asleep in my arms as Bob and I sat with the epilepsy specialist, discussing the EEG results and asking our questions. The human brain is an amazing place; full of energy and a fragile balance that the slightest thing can disrupt at any time. Marvelous and scary.
Despite Chase’s anti-seizure medication having some issues, after two hours of discourse and answered questions, we were counseled to stay the course. We were told that Chase’s brain was still too close to it’s trauma and needed to be protected from itself. Because Chase’s behavior was stable, we were to stay the course, increase his vitamins and call in three weeks to follow up.
[We were also re-briefed and updated on monitoring for any sort of seizure and the actions we should take if we ever observe anything. This included a seizure crash kit of sorts that travels with Chase at all times…just in case.]
May 2, 2014
Three weeks came and went and even with the extra vitamins, the aggression issue didn’t seem to improve at all, so, despite the continued need for neuro protection, the specialists conferred and decided to try reducing the anti-seizure medication. It’s only the tiniest bit (literally only a half of a milligram on one of the two daily doses), but over the last four weeks, we’ve seen a little improvement!
We’ve had some really encouraging, productive conversations with his teams of doctors and are feeling heard on this issue, however, there’s still much left to understand. Nobody knows for certain if what we’re seeing are the effects of medication, or radiation, or tumor, or being forced into an adult life at age two. The one thing we know is that whether we’re in a hospital room with specialists or in our home, with our family, working through a difficult moment; pursuing answers will be a marathon; not a sprint, and only time will prove…
We would so appreciate your continued prayer for wisdom and discernment as we continue to approach who Chase is and how to best care for him in all his facets of this special life.
Moment by moment.
Hear me, O God, when I cry; listen to my prayer. You are the One I will call when pushed to the edge, when my heart is faint. Shoulder me to the rock above me. For You are my protection, an impenetrable fortress from my enemies. Let me live in Your sanctuary forever; let me find safety in the shadow of Your wings. Psalm 61:1-4 (The Voice)
Taking a moment…
In the hours following Chase’s surgery, scans showed that there were some areas of fluid around his brains – pockets, if you will. I regularly flash back to those uncertain hours and the sick, tight feeling in my stomach as we waited and wondered if he would need to go back into surgery.
Those hours resolved in the same day with a second scan that showed no change and it was determined that the fluid could be watched and waited on as Chase moved forward in stable condition.
Chase -as we well know- continues in stable condition, but the January scans (when we received such good news) revealed that these pockets of fluid have changed: now, there is blood in them.
I won’t even begin to write on a technical level about things like “hematoma” that I don’t even completely understand, but I will reiterate this: Chase is stable. If there was an immediate or emergent quality to this issue, we would see marked changes in him.
Chase will, however, be having a repeat scan in a couple of weeks and will be meeting with his neurosurgeon to determine a plan of action. …a plan that I pray will in no way involve booking an operating room.
The wondering and the waiting. The watching anxiously and exchanging worried looks over his head any time he slurs a word or loses his balance. All of it tempts me to despair and curse the cancer…to throw up my hands and scream “This will never be done! This will never be better! There is no end to this awful disease!”
In the middle of this past week, we learned that a little girl who shares our hospital lost her battle with cancer. Her name is Anna. She was 11. Somewhere, her family sits forever changed – doubtlessly reliving the awful moments when they were told that the chemo had done irreparable damage and the very hours were numbered.
I grieve for Anna’s family, yet I am truly thankful for her life’s reminder that I still hold a living and breathing child in my arms and that each second of life is a precious gift.
The day Anna died, I stood looking out the window over the bleak landscape and as I stood, snow began to fall. As I watched the flakes in the air, I was reminded that there is a sovereign God who crafted and knows each design of each flake that touches the earth and he knows Anna’s heart and Chase’s brain and all the whys and wherefores that I don’t and may never know or understand.
I want to tie this all together neatly… The blood pockets in a damaged brain, the chemo-ridden heart that stopped a too short life, the snow that fell and the insight with it. I don’t believe there is a neat or tidy way to wrap these hideous and beautiful things, but this …
“Oh, how great are God’s riches and wisdom and knowledge! How impossible it is for us to understand his decisions and his ways! For who can know the Lord’s thoughts? Who knows enough to give him advice? And who has given him so much that he needs to pay it back? For everything comes from him and exists by his power and is intended for his glory. All glory to him forever! Amen.” Romans 11:33-36 (New Living Translation)
Moment by moment.
Posted in Chase, Family
Tagged blood, Brain, cancer, chemo, faithfulness, gift, God, heart, hematoma, snow