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, but there is really nothing that can truly prepare me for these moments in the vast sea of time.
Eli’s excursions beyond the walls of our home this week have so far been limited to a walk on Monday (November 8th) with our friend Jennifer. Assisting Eli up the stairs and out to the van to drive to the trail for our walk was a humbling reminder of the steady decline of his health. He enjoyed getting outdoors and the weather was not too cold, considering the time of year.
Eli’s favorite activity of the week has been bunnysitting. Sofi and her mom Whitnie, neighbors of ours, have been bringing 2 week old bunnies over for us to cuddle. They even left some of them with us yesterday afternoon for several hours, but it still wasn’t enough to satisfy the kids’ desires to actually own bunnies (sorry kids, I am just not up to the responsibilities of ownership). I admit to enjoying relaxing with Sandstorm, stroking it’s soft fur, while watching Eli and the other kids with the other bunnies (yes, we’ve been naming them).
My last post was a week and a half ago. You may recall my post venting my frustrations over pain management while on hospice. Our experience has led to discussions amongst the hospice team: nurses, doctors, and medical directors, about best patient care and improving pain management in pediatric hospice patients. I hope that these discussions lead to changes which will shorten the time it takes to address escalating pain situations like Eli experienced a couple weeks ago and prevent other children from spending hours in agony. There can and should be better flexibility for responsible caregivers to adjust pain medications in acute pain situations.
I wrote that post after a disappointing phone call, which overshadowed the tender experience of watching Eli raise his star at Make-A-Wish Utah earlier that day.
Eli actually did quite a few things last week, plus we had a special visitor from the North Pole.
Radiation to address the decreased ability to swallow:
More leatherworking at This is the Place with Diamond Jim:
Santa took a break from Christmas preparations to visit (thank you Trent!):
We attended Eli’s cousin Evalynn’s baptism and visited with family afterwards:
Eli and Ella attended a birthday party for their friend Seth:
Eli was admitted back to hospice care on Monday. Our insurance doesn’t cover concurrent care, which means we can’t be on hospice and receive palliative radiation at the same time. So, we’ve been on and off hospice multiple times since August. This is something else I hope to change. My list of things to change in the future has been steadily growing. Every battle we’ve fought has expanded my perspectives on a myriad of issues regarding pediatric cancer and related care. Our kids deserve better in so many ways.
Between bunny visits, I’ve focused on caring for Eli and having the conversations with him that I need to have. He held my hand the other day, while I tried to hold back my tears, and told me “This is victory”. His body may die, but his spirit will live on victorious. Christ already achieved victory over death and I look forward to the day when our family will be made whole again. My imperfect memory didn’t retain all the words we shared and kind things he spoke to me. These past three years have conspired to develop in us a closer relationship than we would have had under different circumstances. It will make the depth of my loss more acute, but our future reunion in the world to come will be that much sweeter.
We are surrounded by angels, seen and unseen. Our angel family, friends, neighbors, and strangers, who care for our needs and wants. I posted a link to Eli’s Amazon list, which I repurposed to include items that make caregiving easier. People have been ordering those things for us and we have received a steady stream of packages, each sent with love. I occasionally think of something new and add it to the list, but we are near the part of this journey where there is nothing we need in this existence, but to transition to the next.
I hate feeling like I am waiting for my son to die, partly because that is what is happening, to some extent, and partly because we still have plans to fulfill. While we have attempted to keep Eli too busy to die, this tactic will eventually fail. In the meanwhile, we are looking forward to attending Ella’s play at Skyridge High School. We’re excited she ended up with a speaking part this time and we are trying really hard to ignore that it’s in Spongebob the musical.
Eli’s brother Andrew will be starting his training next week to be a missionary for our church, assigned to the Fukuoka Japan mission. He will do training online for a couple weeks, then more training at the missionary training center in Provo, Utah, before heading for Japan the beginning of 2022. He will continue to serve for a total of two years. We will listen to him speak in our church meeting this Sunday, November 14th at 1:30 pm Mountain Standard Time. Andrew’s talk will probably be after the 1:45 pm mark and can be viewed remotely via this link (select Eaglecrest 1st Ward).
We have tickets to Brandon Sanderson’s mini con. That’s the week of Thanksgiving. At this point, I don’t think Eli will make it that far. If he is still alive, I don’t think he will have the energy, but he’s surprised us before, so we shall see. Eli is ready for the next step.
Final words from Eli: “Thank you!”