The Rhythm is
Elusive. It’s hard to believe it is September already. August flew by and we had a great couple of weeks at the beach…more to come on that. We got back and have been wrestling through the days trying to pin down a routine. As expected, it is proving to be a bit slippery.
We knew it would take a couple weeks to find a groove, but sometimes knowing something is coming and psyching yourself up to grind through it when it comes are two different things. There have been a few factors at play. For one, the twins do not start preschool until September 7th. That’s only two weeks after getting home from the beach and only a week and a half after CMS started, but man, it seems like a long time. Another is the continuing impact of COVID on work…are we meeting in person, are we not meeting in person. Plus, we moved our office last week, so even if I had been able to go into the office there was no office to go to. But, probably the biggest factor is Jennings and his medical schedule.
His team encouraged us to do one more week of the low-dose Azacitidine right before his infusion for the trial. We were all for it. We got home on a Sunday evening from the beach and Monday morning he was in clinic for chemo. He had a lab draw on that same Monday and continued the daily chemo shots all of last week. He tolerated the chemo pretty well again, only experiencing excessive fatigue one day late in the week. Other than that he ate, played, and acted normal. His bloodwork from the lab draw looked good and we just got his chimerism back yesterday - 100%!! 🎉 The everyday clinic visits definitely put a wrench in the week though. Round trip, they take about an hour and a half and with COVID, none of his siblings can tag along. With no preschool, that means one of us is with them at home and one of us is taking Jennings in. So much for any kind of morning productivity.
The other piece, medically, which is in the way of establishing a routine, in more of a mental way, is that the trial is now delayed. We got that email the Monday we got back from the beach. A piece of lab equipment that is used to test the cells prior to giving them is down. The cells are ready, but without this test they cannot sign off that they are safe and therefore, cannot give them to Jennings. All the trial coordinator knew last week was that getting the infusion on 9/1 was not happening. We got the old “no updates” at the end of last week and as of yesterday, they have moved into the “waiting on parts” phase. Fantastic. It’s a microcosm of my professional life.
So, unfortunately, we did not travel to DC as planned this week and the trial that has been on the horizon as a possibility for months remains just out of reach. Last week, we were comforted in our disappointment by the fact that he was getting the low-dose chemo everyday. It felt like we weren’t just waiting. However, as we move further out from the last dose of Aza, that comforted feeling will fade quickly.
Some photos from the routine-less weeks…Jennings rocked his second 1st day of homebound kindergarten. Caroline started 3rd grade - hooray! Bottom, Jennings living that clinic life.
The team is talking and planning for other check-up visits and potentially an additional round of Aza should the delays continue, but the prayer is that the equipment problem is RESOLVE(d). See what I did there? I know, it was nice.
Speaking of prayer…L organized an intimate night of worship and prayer specifically for the trial and Jennings’s cure. It was a beautiful night with family and close friends, organized and led by some amazing people. Originally, it would have been the night before we left for DC, but the ask and the focus were still the same. Photo creds to @carolineyorkphoto.
When I said the delay is more of a mental obstruction to routine, I meant that the trial date originally fell neatly into this two week window coming back from vacation. We knew this would be a time of continued unsettledness and the thought of knocking the trial out in that same period seemed great. You see, this trial marks the beginning, or major resetting in our eyes, of the waiting game. Starting this clock now would have fit nicely in our plan (keyword: our). The waiting itself is odd, as I’ve shared before. Essentially waiting for nothing, hoping that CBCs continue to look normal and chimerisms never change, always coming back at 100%. Time seems to be the only salve that releases the mind’s hold on the waiting. We will really never know if it works, only if it doesn’t. Just like a transplant if you are MRD negative going in and if you stay in remission and are cured, you won’t know whether it was truly the transplant or if the disease would have stayed away forever on its own.
So, we look forward to the start of preschool and hope the trial can happen soon. Both of these will help us on the road to establishing a rhythm. We’ve absolutely been taught through life that order and control are false gods and that the pursuit of them is a vain striving after the wind. But that doesn’t mean we’re always good students. Here’s to another lesson. 🍻
And here’s what two weeks of vacation with the Palmer six looks like 👇
Left to right, top to bottom: Smallish “cheese face” Bear by the pool. The second week was “friend week” with family friends all the way from Nashville - that’s all seven on the beach at Nags Head. Got to see all the wild horses on the wild horse tour…even one dipping his hooves. It’s always snack time for Smally and Slim. Ice cream with Pops in downtown Manteo. The whole crew on the dock at the house.
Left to right, top to bottom: it is truly fascinating how many times a child will jump in a pool over and over. Our fearless crab hunter at work on the beach at night with a smallish crab. Mommy wrestle time in the pool. Looking pretty good for four and a half months post-transplant. We thought we lost Mommy so Caroline instructed the others to bury her…it was a false alarm. Jennings giving that poor wave what for.
A few posed….and then I saved the best for last 👇👇
This is Charlotte on a Saturday afternoon after a couple hours in downtown. She can be a bit clumsy. Before lunch, she completely into a giant mud puddle and got so wet that we let her walk around topless the rest of the day. After lunch, she walked straight out of Kitty Hawk Kites, tripped off the wooden platform, and faceplanted in the grassy sand. She used mostly her bare chest and a little of her face to break the fall and stop the slide, no hands. She refused help trying to get up, looking mean as a snake, “I can do it by mine own.” Never a dull moment around here.
“For the Lord will not cast off forever, but, though he cause grief, he will have compassion according to the abundance of his steadfast love; for he does not afflict from his heart or grieve the children of men.” Lamentations 3:31-33
#allinforjennings