As the Days Grow Shorter…and We Push on

It has been just over a month since Ethan’s last update. Ethan is no longer able to update his blog so the reins have been passed to me, Adam, Ethan’s little brother.  Though I know my brother’s literary sense is a bit different than my own, I will try my best. As they say, imitation is the greatest form of flattery. As a preface to this piece, Ethan’s condition has been in decline since his last oncology visit in mid-October.

Picking up where Ethan left off, we have had a few more adventures. Sonja has taken a leave of absence from work to care for Ethan, as have my parents and I. It was a nice long fall that brought some good weather to have some time out in town, hitting up coffee shops and lunch spots with a constant stream of good friends passing though. With snow beginning in the alpine, skiing has never been far from Ethan’s mind, so when opportunities arose, it was time for the age old drive to the ski area parking lot to see how much snow had been made and banter about the upcoming WROD sessions (for those non skiers, White Ribbon Of Death, the strip of man-made snow which hundreds of people cram onto to get their first turns of the season before real snow falls. Collision central).  Of course there were also stops in Banff in which we attempted to satiate Ethan’s never ending desire for ethnic food, including scotch eggs, sushi, and beaver tails for dessert. During this period, the numbness in Ethan’s left hand began to expand to his left foot as well, making walking a little more difficult.

Taking a walk at Lake Minnewanka, enjoying the weather while it lasted.

All the Johnson’s together at Minnewanka, even got the dog Chance in there.

We also took the opportunity to head to visit Sonja’s parents at the farm in Rimbey. Though it was only a quick overnight, good times were had. Most of Sonja’s family joined us for dinner, making a party of 15, which makes for a full table. Before sitting down for dinner, Ethan and Sonja presented Sonja’s nephew, Wyatt, with his first pair of skis. Needless to say, Ethan continues to pass on the stoke!

Wyatt is stoked for the skis, helmet and all….the “go fast” tuck….and trying to figure out where the on button is.

After the trip to the farm, we headed back to Canmore for a rest before packing for a trip south to Montana and beyond. My father headed back early for a few days of work, so it was Ethan, Sonja, my mother, Chance (the family dog), and myself loaded in the Toyota and headed for the border. After a successful border crossing where they did not even question a carload of mixed Canadian and American passports, we made it to Whitefish.

It was nice to be at home in Whitefish where we could all stay under one roof. Our plan was to have a few days in Whitefish, in which time Sonja’s parents and two sisters came down for a visit for the weekend, before heading south to Colorado and New Mexico to show Sonja where we were born. We also wanted to introduce her to real authentic New Mexican cuisine and sample the world’s best green chili.  On Friday, November 7^th, Ethan, Sonja and I went up to Big Mountain (we still refrain from calling it Whitefish Mountain Resort) to get out of the house while we waited for the Hehli’s to arrive. A few minutes after returning home, Ethan had his first seizure. Less than a minute but scary as hell. We were very glad to have Sonja’s family arrive safely later that evening and we spent a wonderful weekend driving in Glacier, eating wonderful food, and enjoying a great weekend. Ethan had no further seizures.

Walking along the Whitefish River with the Hehli’s and the Johnson’s….and the Hehli’s down for a visit in Whitefish.

We considered bagging the trip to New Mexico in light of Ethan’s seizure, but he did really well afterwards. It almost seems that his brain simply needed a reset. In the spirit of another Johnson Great Adventure, we decided to give the trip a go and drove down to Anaconda, MT to see our Aunt and her boyfriend despite a call for a blast of artic air heading south from Canada. Given we had a full car, someone always needs to pee, plus having a shopping break in Missoula, the usual four hour drive took more like 6. But we made it, and made it in time for a fresh baked pumpkin pie! Anyone who has ever been to Anaconda knows Anaconda is not big. There happened to be some sort of convention in town so no lodging was available in town, therefore we drove on to Butte to stay the night. It was here that the arctic air caught up to us. Temperatures dropped to -27° F overnight. Waking the next morning, we headed towards the free continental breakfast. I had to support, almost carry, Ethan down the hall as he was having a difficult time walking. We arrived at the breakfast room that was freezing cold. Apparently someone missed the memo about checking the heating system and the heat in that wing was out. No problem, it was only -20° F outside. A saving grace arrived when Ethan sat down, Biscuits and Gravy was on the breakfast bar! With massive grin we dug in, hoping some extra calories would keep us warm. Because of Ethan’s inability to walk on his own, the cold temperatures which left the roads with rather treacherous ice, and snowy weather all the way to Denver. We called it and headed back to Whitefish. Part of the goal of heading south was to see family in Denver. Instead, Denver came to us with our grandmother, Aunt, and Uncle flying up to Whitefish to spend the weekend. Over the weekend, Ethan’s ability to walk on his own did not return and he needed increasing help, which we were beginning to struggle to provide as he became wheelchair bound. We as a family decided, come Monday, November 15^th to head back to Canmore, get him back in his apartment, and call in the visiting nurses/hospice to assist us.

We have had Ethan in palliative care in his home for nearly two weeks now. Sonja’s family has been rotating through as well, which we all have been thankful for. Between the two families we have quite the medical crew consistently at the house. We have a soon to be retired cardiologist (my father), an 10 year retired Occupational Therapist (my mother), a newly minted Respiratory therapist (Sonja’s Sister), and a Registered Nurse (another of Sonja’s sisters). This is on top of the hospice team, the family doctor, and members of the Tom Baker Cancer center making house calls. Everyone agrees he could not be in better hands anywhere else in the world.

Ethan continues to ask if he will be able to ski this winter and ride his bikes this summer. His optimism is strong. We are constantly reassuring him that his skis are all set for the season, boots are ready, and that he does actually passes at three resorts for the season. As for bikes, he is planning on his next bike purchase and getting back out on the DH bike.

The support the Canmore and Bow Valley community has been incredible. From the doctor who lives in the neighborhood performing house calls every other day, to the neighbors cooking us food and giving us a place to stay, to friends arriving to build a wheelchair ramp to Ethan and Sonja’s front door and the neighbor kids who have been shoveling for us. The out pouring of support from near and far has been astounding and we cannot express our gratitude to each and every one of you.

I will try to keep this up to date. I am not what you would call a social media person and trying to keep all his outlets up to date is forcing me to learn this on the fly.