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 known when it was until Erin’s text.
I asked Eli if he wanted to go. His response was an emphatic “Yes!”, so I bought tickets and started making plans with my sister in law Kate, who was in town. We had an amazing time over the next two days.
The morning of the first day I was feeling so grateful that the Faire coincided with Eli’s increased energy, that I emailed the Faire a thank you for the future memories and I explained briefly about my son’s situation. They responded after the first day offering a place of honor at the joust and a meeting with the royals. After communicating with them on Saturday, the various groups at the Faire wanted to do something special for him.
Being Wrong, again
How did we get to the point where Eli could spend two whole days at the Renaissance Faire?
Two weeks ago I didn’t think Eli would still be alive this weekend. I was wrong. I’m okay with that. He had been so tired and slept so much of each day, and it was only getting worse. That was what we’d been told would happen as we moved down the path towards this journey’s end.
Then, Eli had a good day, then another, then a good week, now another. We’ve also been told there will be ups and downs along the way. I am grateful for the ups.
We don’t believe in sitting around waiting for death, so we have continued to live. Eli started a couple classes at the high school the other week, and even attended some of them, when he had sufficient energy.
Then there was the day that Adam and I came home from our date and Eli was missing. His shoes were on the floor next to his spot on the couch, so I knew he couldn’t have gone far, but we couldn’t find him anywhere in the house. His sister Valerie thought to look outside and found him laying on the trampoline.
Another day there was a storm that led to a power outage and a fallen tree on the street below our house. Eli wanted to join the clean up crew, so he sat on the sidewalk watching for danger.
And one good day turned into another.
And another, and so on.
Then Eli complained about knee pain, so we took a break from hospice so he could get palliative radiation to address the cancer there.
While we’re off hospice this week, we’re taking care of a few more things, like radiation prep and checking on Eli’s lingering cough. The assumption is that there is disease in or around his lungs, making him feel the need to cough. Since the radiation oncologist needed a head MRI, I asked about getting a chest xray to check for lung metastases while we were doing imaging. That’s where we are right now while I am finishing up this blog post.
Over all, Eli has been gradually improving since my last post. I am putting this down to positive results from prior radiation, medication management, and response to the oral chemo he’s been taking. I am grateful for more time. Please continue to pray: for increased energy and continued response to treatment.