It is Finished

Lord, let it be so. The infusion for the RESOLVE trial happened last Friday, 9/17. Shortly after the last update, the machine was fixed and we were able to snag this appointment, which was the earliest available. Thankful for all those who coordinated to make it happen.

Because of the several week gap between the week of azacitidine and the trial, Jennings was seen in Charlotte one time the week of Labor Day. His labs from that visit looked good and we got his chimerism back early last week before we left for DC…still 100%! That was a nice boost heading into the trial.

With the new date being a Friday, and with CMS having a teacher workday the Thursday before, we decided to drive to DC and make a weekend out of it. Caroline came along and the twins stayed behind for some special grandparent time (thanks, Nana & Pops!). We made it to DC late Thursday just in time for rush hour, Thursday night football traffic, and an intense thunderstorm. Topped off the trip with the obligatory marital spat over parking in an unfamiliar big city and settled in for the weekend. The main event was first thing Friday morning.

Clockwise from top left: Jennings relaxing with his hand IV…his preferred placement location. Close up of the engineered T-cells going in. The team pushing the cells and monitoring vitals while J assumes his typical exam room position. A very special delivery.

The infusion of cells took less than 60 seconds. The 5-hour appointment was filled with waiting, a lab draw, a full exam, getting lab results back, pre-meds before, then a 1-hour post-infusion monitoring period to make sure there were no reactions to the cells. And just like that, after a half-day outpatient visit and a painless dose of cells, J-man had received his last bit of treatment. We hope and pray...and we celebrated. 👇

We have given this our all. We had the best pediatric AML minds confer on his treatment plan. We made the hard decision to delay transplant and continue therapy hoping he could get MRD negative. Gave him arguably the best bone marrow transplant that science has to offer. Loaded the gun for a DLI when his chimerism gave us a scare. And we relentlessly pursued proactive therapy.

There is literally nothing else to do for him but pray. Prayer has always been there; a part, huge part, of his treatment. But God also uses secondary means to accomplish His purposes. We have exhausted those and that was our goal. There is peace of mind in that. That there are no stones left unturned. Jennings seemed to grasp this on Friday in the BMT clinic at Children’s National. He asked Lauren, unprompted, but knowing he was at a different hospital, “So the team is working togettuh?” “Yes,” she said. He followed up, “So dey can fix me?” “Yes,” she said. And then he asked, almost rhetorically, “And dey are going to do their best?” They are and we all have.

We focus now on life. No matter how much or how little we have…with him or with any of us for that matter. He is cured until he’s not. And that leads us to pursue life to the full for him. Sometimes that means going over the top to make memories and sometimes that just means letting him jump on the hotel bed. 👇

COVID and the Delta variant complicate our desire to let him live. We are cautious…but not overly so. This quote has stuck in my mind ever since my high school math teacher wrote it in the corner of the board: “A life lived in fear is a life half lived.” This was in the days following the Columbine school shooting when some kids were skipping school, and I think it is as useful for our situation now as it was back then. It’s not an excuse to be ignorant, rather a prompt to remember our time in this life is fleeting and to make the most of it. We don’t know how much life he’s got, so we’re determined not to waste what he has.

DC fun, left to right: A nighttime private tour of the monuments with Jennings hanging in there after a long day. The Museum of the Bible…incredibly well done and one of our favorites from the trip. The bigs outside of the International Spy Museum. Lunch at Ben’s Chili Bowl. Outside the Washington Monument. The view from the top, thanks to Senator Thom Tillis’s staff who hooked us up with some connections around the city.

Meanwhile, preschool has started, school at home continues for J, and we are beginning to find a groove. Here are the tornados rip-roar-’n ready for somewhere to go and something to call their own. They got a nice send-off from their cool big brother.😂

Through this process of settling in, beginning to think about routines, starting to find rhythm at home, we have experienced many ordinary moments. Memories from DC or from extended time at the beach, those are great. But, I think we both agree, the ordinary moments we experience in the day-to-day are equally as great, if not better. A couple weekends ago, we had nothing major on the calendar and we walked down to our neighborhood park as a family three days in a row. We have all, especially J 👇, come a long way and it’s been a long time since we’ve experienced ordinary. God is good.

“My Spirit remains in your midst. Fear not.” Haggai 2:5

#allinforjennings