I thought up the title for this post months ago, knowing the final destination, but not knowing how long it would take to get there. Eli is still with us, but I can tell it won't be for much longer. I have sought to learn what to expect here at the end of the road, …
This quote has been running through my mind since Eli had a bad pain episode a week ago starting about 3 am. He had texted me asking for water for his 3 am meds. I had been woken up by our 4 year old climbing into bed with Adam and me about 2:30 am, so …
Continue reading First things first, to the death. No. To the pain.
Radiation Eli finished his radiation Wednesday, October 13th. He had some increasing pain in his back, so he had previously been unable to lay down on the table long enough for the radiation. So, I gave him all the pain meds at my disposal (maybe 5 or 6?) and he was able to finish. Eli …
For the longest time, when asked how he was doing, Eli's response was "Same as always". In his mind, this response made perfect sense since he felt generally well and that was the same as he always felt. It bugged him to always be asked the same question by every medical person who rotated in …
On August 8th, I took a leap and bought tickets for the family to go to FanX (a comic con in Salt Lake City). The kids, my sister, my niece, and I had been talking about going to FanX together. With Eli's deteriorating health and prognosis of looming death in the coming weeks, I was …
Continue reading Living in the Moment, Planning for the Future
View as we drove away from radiation treatment As Eli and I were driving home from the couple of appointments he had today, we were greeted by pouring rain, pounding hail, thundering lightning, glowing sunshine, and a stunning rainbow. As I pondered the visits with doctors and staff, I realized the weather was a perfect …
Sir Eli the Boss Last Thursday, August 26th, our friend Erin texted me to see if we were going to the Utah Renaissance Faire, which was starting the next day. We've been attending for a number of years, but with Eli's declining health, I had decided not to go this year and I hadn't even …
Since my last post, I have come to think of each day as a good day or bad day for Eli. Saturday and Sunday were "Bad" days, while Monday was a "Good" day. Today? A little bit of both. What is a bad day? This is a day where Eli is too tired to engage …
Since the very beginning of this journey, the thing that has made it bearable and even beautiful has been the support from our community, near and far. Cancer is a terrible disease, but it has brought about the best in everyone around us. Past grievances just faded away and we have been surrounded by love. …
I wrote this post in October 2020 after September's round of radiation. I never managed to publish it, but no time like the present. This is one of Eli's wishes that I'm surprised didn't happen sooner. With a busy schedule and a failed attempt or two to schedule a battle with Nerf guns, this feat …
Eli The Boss 