Friday, June 1, 2018

An Update from Julienne

June 1st, 2018: One Year Later

12:47 PM
"Remember the mountains and valleys that got you here. Remember the things you never thought you would accomplish but did. You may have a long way to go but never discredit how far you have come. May you always remember the endless, boundless grace that finds you over and over again." - Morgan Harper Nichols

One year ago today, the first symptoms have started. I still remember clearly the days he spent in bed at home and the days leading up to the second 911 call of the week (June 5th); he complained about the dizziness and headaches that won't go away, the confusion and the blank stares, the waking up in the middle of the night-just pacing around the room, the struggle to stand up and the consistent brain fog. I remember cleaning my house like mad because I knew I would need someone to come in and stay with the boys while I took him to the walk-in. (It's a housewife thing!) To ease our worries at that time, I jokingly told Stephen that he should be sick all the time, for it makes me want to clean my house inside out. I guess that joke backfired and my house still isn't always clean either!

One year ago, I saw my husband slowly lose everything to this then-mysterious disease. It takes a great deal of strength to keep ones composure as he was being poked for spinal taps, IV's, being restrained, having accidents and being cleaned up by nurses - all that while trying to understand medical jargon that somehow became all too familiar over time.  I observed how my smart and numbers guy struggled to tell time and answer simple math questions by the neurologist. I helped my once strong and capable and independent husband go to the bathroom and shaved the ever-growing beard he kept for that "hospital" look. The same strong and healthy man I fell in love with looked smaller and smaller as he moved from one hospital bed to another.  And with new beds came more 'gears' to help him: new lines, new monitors, new beeping noises. Probably one of most painful sights I've ever seen was from the time he was in the ICU. I guess that goes without saying but for me, what truly stood out was underneath the multiple tubes and cords and the beeping noises that came out of every machine that supported him, there he was… my gentle Stephen, my heart… so beautiful and peaceful looking; yet he seemed so fragile from where I stood and there was nothing I could physically do about it. That memory, that helplessness, no matter how hard I try to forget, will always haunt me.

One year later, and I've done more than just to help him use the bathroom or shave him. I say this not to brag or show off because I know that I wouldn't be here, doing all things extraordinarily, without the many help and support we have received from Day 1. I am always amazed and deeply humbled by the continuous grace and patience and love from everyone around me. Most of all, I know deep in my heart that God equips us to accomplish things in ways we have never even imagined. His strength is perfect in my weakness. It's been a crazy, challenging and downright depressing year, to say the least. But God has carried us through and despite of it all, has blessed us in so many ways.

Below is a video following our move from the hospital. It is one of the most raw videos I've ever made and was a tough one to put together. It is part of a workshop that I took recently. My mentor encouraged me to put together something that shows my perspective - to which I was a little apprehensive about because there really isn't a way to show what I truly feel but I hope this video can do a little bit of that. I also want to say that this isn't a call for attention or pity… as a matter of fact, I do think I've had lots of that already - and thankful for it, actually ;)  This, I hope, would portray that in the times of this new found "normal", there will always be an underlying grief that is real, so very heart crushingly real. The pain of the past and a void will always be there… it's in the moments of solitude, it's when I wake up in the morning that I feel it so intensely; but life goes on. Above all, I pray that this video shows that the circumstances do not define us - I'm not just the 'wife of that guy who had an autoimmune disease', our boys are not fatherless because I'm certain that what they see in their dad's suffering will mold them and teach them invaluable lessons in life; and that Stephen, is still Stephen - so loved and valued despite the obvious challenges.  We are hopeful for what the future holds (Jer 29:11). So I pray that you may find hope as well. For each of us have our own crosses to bear, but we can hold on to the faithfulness of God's promises and that He will see each of us through and sustain us.

To Stephen - we/YOU made it to one year of slow and steady growth. Let's make this year a better one!

"May this be the season you learn the art of bold surrender. Trusting in the greater plan beyond all you understand. Ever-assured within the grace: you are where you need to be. Day by day, may you learn to live for more - not perfection, but fullness. A life that goes beyond the shore. Even when you do not have as much time as you once thought you would. Light is winning. Ever-working things together for the good. So take deep breaths often and pursue this glorious depth that reminds you every morning: you are far from finished yet." --MHN

Thursday, May 31, 2018

Update from David

June 1 marks a year from the beginning of Stephen’s battle with ADEM.  He came home that day complaining about dizziness and vertigo.  We still do not know if those were the first symptoms of the onset of ADEM or if his ear infections provided the trigger for his immune system to begin its attack on the neuropathways of his brain. 

The first trip to the ER revealed an ear infection. During the second trip, Julienne insisted the doctors take a closer, longer, deeper, look at what was going on.  On June 6, Stephen was admitted to the Misericordia Hospital where he was first diagnosed with ADEM and a treatment of steroids was initiated.  On June 16 he was transferred to the Neuro Unit of the University of Alberta Hospital because he was not responding to treatment. 

His neuro team at the U of A Hospital started a new differential diagnosis to figure out what was ailing Stephen. He went through numerous MRIs, CT scans, lumbar punctures, blood tests and brain biopsies.  In the end, he was diagnosed with atypical-ADEM. 

Rapidly the attack on Stephen’s brain had rendered him unable to speak and in a state of quadriparalysis. By June 21 he slipped into a coma, was placed on life support, and was transferred to the Neuro-ICU.  On June 25 he received a heavy dose of Methotrexate (a chemotherapy drug designed to penetrate the blood brain barrier) that would kill or stop whatever was leading the attack on Stephen’s brain.

The treatment worked. Slowly the inflammation in his brain subsided. In mid-July he was transferred out of the Neuro-ICU and back to the ward.  Several weeks later his ventilator was removed and he again breathed on his own.

On Jan 24 he moved into Touchmark, a beautiful long-term care facility minutes away from Julienne and the boys.  His room at Touchmark has become an extension of their home.  Julienne and the boys hang out with Stephen often; his friends and siblings watch hockey there with him, and his family recently held mom’s 65th birthday party there. Mom spends virtually every day with him and has become his physiotherapy assistant in chief.  

His recovery has been agonizingly slow. He is able to lift his head to look around.  In recent weeks he has been holding his head up longer and looking around more vigorously.  He has regained very limited movement of his left arm and some movement in his toes. 

He has not yet regained the ability to speak but he communicates through crying, smiling, and laughing.  His communication makes clear to us that he is very much conscious and aware, that he can follow a conversation, and that his personality and memory remains intact. 

We are thankful that God has spared his life, that we can begin to see signs of recovery and healing, and that we have hope for the future.  We pray that in the year ahead his recovery will accelerate.  We pray that God will continue to strengthen and sustain Julienne, Kayden, Noah and Gabe; that he comfort them and Stephen during the many difficult days; and that he provide them all with hope for the future. 

--David Slomp