In so many senses, I am not ready. Not even ready to write this blog. As I’ve sat here for 30 minutes, trying to gather my thoughts, staring at a blinking cursor, that is the consistent theme that keeps popping into my mind. I’m not sure what to do with it or where exactly it comes from, but it is where I find myself.

Before we get too far, Jennings is great.

This blog began, three and a half years ago on Caring Bridge, as an easy place for us to update a wide audience (for which we are so grateful) on him and his overall health. It became more than that, though, and began to chronicle one family’s journey through the life-altering battle against pediatric cancer. It is an outlet for me as I process life. It has become my “job” and one of the few things I feel like I have to do on a consistent basis. So many people care for our family, pray for us, and share to others beyond this circle about Jennings. We owe it to them, to you, to provide updates. You don’t make me feel like that; I make me feel like that. And if I’m going to do it, I may as well give you a peek behind the curtain and let you into the real journey while making an amateurish attempt at making it entertaining.

I shared last week about the semi-paralyzing uncertainty that we face. I have felt your prayers for that, truly I have. But, their effect has seemingly been to give me peace about that reality. I am ok with not being ready for it to be different. We are at Day +56 and Jennings is doing fantastic. He is so much farther along in his recovery than he was three years ago. Yet, he is still a little over six weeks from the first real milestone in transplant recovery, Day +100. That is typically the “going home” day, and then you shoot for six months, then one year, and so on. It is during those first three milestones that the statistical curves that plot success or failure against relapsed high-risk leukemia look like double black diamond ski slopes. I read a draft this week of a medical journal publication that the transplant team at St. Jude is working on with several such figures in it. I was quickly reminded of where we are.

You look at Jennings or spend a few minutes with him and you are tempted to fast-forward to the safety of the flat lines in those figures that really don’t begin before year three (as we well know). So, despite his great status today, I am not ready to let my guard down. Up until this week, we haven’t even been ready to ask if he will be here all the way through the 100 days. He’s doing so well, we’ve wondered if it might be earlier. I finally asked, at Lauren’s request, at his check-up on Wednesday and Aimee gave us a typical conservative answer. “He looks great, so Day +100 definitely looks good right now,” basically implying that anything sooner would not be on the table no matter how well he might be doing. I almost breathed a sigh of relief at that.

She did, however, float the idea of taking his central line out. She admitted it is probably not the right time, given that things are still up in the air regarding potential proactive therapies. But, he is only having labs drawn once a week and is otherwise quite stable, so there is not a clinical need for him to have a line. I jumped on the “not the right time” sentiment hard. We are definitely not ready for that. We do still hope to come up with some offensive / proactive treatment and are not sure what that would entail at the moment. That’s the main reason, but also taking the line out, to me, is a small symbolic declaration of victory. It typically accompanies that first 100-day milestone. Not there yet, so not ready yet. Jennings doesn’t mind it anyway and I actually think it will be bittersweet for him when it goes. It has been a part of him for a long time. Oh, and that’s not to mention that him getting poked, even if it’s only once a week, is not something we are ready to start.

So I find myself not ready to move on. Not ready to face anymore life than a week at a time, in Memphis, as a family. We also have a second grader fully immersed in a new school and a new class. We have the twinks assimilated into their 2-day a week preschool. We owe it to them to finish out the school year without anymore change (if possible).

Last time around, as we moved further and further out from transplant, we had a mantra to speak into the anxiety and fear before each weekly blood draw, then bi-weekly, then monthly. He’s cured until he’s not. Our way of reminding ourselves that, right there in that moment, he was cured and we should live like it. As you’ve probably gathered, if you’ve made it this far, I am not quite ready to say that.

That felt like a lot of text, so here is your picture reward. This week’s appointments went well. Jennings had a pulmonary function test on Monday and did very well. He tried these at three years old, but even at six it’s a bit of a stretch to get him to understand the ask, but the pulmonologist thought he did great. There was debate among the team about whether or not to perform a bronchoscopy to determine the source of the nodules in his lungs. The pulmonologist lost this round and we will hold on the procedure for now. He’ll have a repeat CT around Day +100 and that will determine whether or not we go ahead with it at that time. It is fairly invasive and requires sedation, so the transplant team would like to avoid it if possible. This was much to the pulmonologist’s chagrin who had told me he would be scheduling the procedure after our consult. He had to call me later, “So I talked to the BMT team…..and they did not agree with my recommendations.” 😂

His labs looked as good as his mood on Wednesday. That’s him in the blood draw chair in the BMT clinic 👆. He told his nurse she would have to play an arm wrestle game using the lift-up chair arms before she could get to his line. She complied and was, of course, defeated. Another nurse came in after his labs and he challenged them both. They asked, “Are you sure? You think you’re strong enough?” “Of couwse. Sure, I’m sure,” he said. He, of course, defeated both of them and they yelled, “You’re back Jennings!” This led to a brief period where he referred to himself as Jennings Back. “Jennings Back needs to go potty” and so on. He told me walking through the halls, “That was fun playing with doze weak nuwses.”

His weight is steady as well. No change from the gains last week. He took his final dose of Sirolimus (immunosuppressant) this morning and has shown no signs of GVHD during the wean. The higher risk time will continue for another couple of weeks as we see how his new cells react with the governor fully removed.

This past weekend we split up by gender. L and the girls took off for Nashville to see one of her best friends from college. The boys and I bach’d it up in Memphis.

Our first stop was Bass Pro, top left, where we climbed all over sparkly boats like we could afford them. These are boats that cost more than both of our automobiles, combined. That’s Jennings, top right, housing a croissant and Henry into some cotton candy while watching Trevor go #1. Friday was driving range and putt putt. Forgot that Henry is left handed, so he quickly tired of trying to use a right-handed golf club and started throwing range balls onto the driving range as fast as he could….but with great purpose.

Clockwise from top left: Crash test dummies. Fried chicken and Mighty Ducks 2…Chick-fil-A for the boys and Gus’s for me. A rare, prolonged FaceTime with Gigi who captured their attention reading construction books. Popsicles at Cordelia’s.

The girls told us, “What happens in Nashville, stays in Nashville.” Or is shared on Instagram. In either case, these pictures are all I got. That 3-year-old going on 22 in the top left just kills me.

We reunited this week and the koala family wasted no time in getting back together 👇. That’s mom koala, Chompy, Peanut, and Peachy. Oh, and Caroline had a Women in History project for school. She got Selena, which has been Lauren’s dream come true. We celebrated Cinco de Mayo with a dress rehearsal and a couple episodes of the newly released Season 2 of the Netflix special. L nailed the costume.

Happy early Mother’s Day to all you moms out there. We’ll celebrate Lauren with her second one in Memphis on Sunday. We’ll miss our own moms, but are so thankful for their love, support, and prayers. Love you, Gigi. Love you, Nana.

As the Psalmist writes in Ps 50: 15, “and call upon me in the day of trouble; I will deliver you, and you shall glorify me.” Exactly how this plays out, we do not know. Yet, we are confident in its truth.

#allinforjennings