Wah Wah
Well, parainfluenza, you win. Jennings’s cough has not relented and is probably slightly worse than it was mid last week. And, that my friends, has wrecked the original plans for getting home.
The weekend went really well and we executed that first phase of the plan with no issues. We had one last hurrah saying bye to friends with an extra sweaty outdoor pizza party. One of those summer days when it storms, then the sun comes back out, and the humidity wraps you up like a wet blanket. But, it offered an opportunity for fun and fellowship, so we were thankful.
Look girls, no legs. Look guys, no bellies. My cropping skills are improving. And then there’s Charlotte, getting in one last hug from Miss Kelli with J and Caroline in the way back fighting over poor Rooney.
We got up, minus J, and got on the road Saturday morning at 5:01a. We pulled in the driveway in Charlotte at 5:00p. Considering we lost an hour along the way, that’s not too bad; making a straight 10-hr drive in 11 with three kids. We made good time until we hit Gastonia on I-85 and the skies opened up (for my Charlotte friends, there’s a joke in there somewhere). We topped out at about 30 mph for the last 15 miles or so of interstate.
We unloaded the van, said hey to my aunts & uncles who just happened to be in town visiting my parents, and then I was back off to the airport about an hour and fifteen minutes later.
Sunday was a good day. It was our first day of just Jennings and me and we were looking forward to plowing through the week to get back home to Charlotte. We got in one last church service here with The Avenue. They just happened to be having their summer kickoff service outside, so it felt safe and manageable for Jennings. We bummed around the quiet Memphis house the rest of the day avoiding the heat and watching college baseball. I even grilled out, just for me…the old party of one, using some of the produce that has just started to ripen in the “garden.” I couldn’t convince Jennings, so he had Panera mac & cheese. We were feeling alright.
Monday is when the wheels came off. We showed up bright and early at the Jude, ready for his bone marrow aspirate. I found out at the screening desk that he was in isolation. I should have realized this beforehand because of the virus, but it just didn’t register. That meant we got a special gowned escort up to B clinic where we were locked in a room for the entire duration of his appointments.
We got his labs done and the pointless pre-procedure COVID swab, but there was an issue with his first set of labs and the electrolyte results so those had to be re-run. In the meantime, Danielle, his NP for the week, came in and raised what would be the bigger issue: his cough. Again, I should have known this was coming based on his symptoms, but again, for whatever reason, it just didn’t register. And because of that, what she said hit me that much harder, “We may not be able to clear him.” Sure enough, the transplant doctor in clinic that day came in and nixed the procedure. Sedating him would be a no-go. With that, the wind left our sails and has yet to return.
The BMA procedure, clinically speaking, is a routine check-up. It is not being done out of any pressing concern or providing some critical piece of information to direct imminent treatment. Because there is no urgency around it, the risk of sedating him with a cough and inflamed lungs is not worth it. They don’t have a whole lot of tricks up their sleeves when airways are already constricted and then the lungs start having trouble keeping up. So, to avoid that doomsday scenario, and the other potential scenario of further aggravating the viral inflammation, sedation was off the table.
We had a follow-up appointment today where we were able to see Aimee and figure out a new plan. His labs from the week all look good and his chimerism is already back and is still 100%. We talked through his current state (still coughing) and how to get from today to being home. One option was trying for the BMA procedure again on Friday, but the only slot available was late in the day. That meant two things: 1) we would not have results until late Monday at the earliest and 2) he could end up going NPO (not eating) all day only to find out he wouldn’t be cleared for sedation yet again. We could still go home on Saturday, but we wouldn’t have any results from the procedure and he would still have his line in.
That all felt like we would be setting ourselves up for more disappointment one way or another, so we opted for the other option. We will do one procedure next week and combine the BMA with the line removal. We are hopeful that this can be Monday morning and that we would get results back on Tuesday with us driving home on Wednesday.
None of us was excited about having to spend a week split between cities again, but it seemed manageable and Lauren was able to plan a big Welcome Home party for Jennings which offered some consolation. That was planned for Saturday evening right around the time we would have been pulling in from the drive. It was the perfect way for a 6-year-old to return home. Having to cancel that, extending the time we’re here & separated, and having to leave the plan for rescheduling open ended for several days has led to some major disappointment. Jennings had some major tears on Monday when I had to break the news to him.
We are well aware that the situation could be incredibly worse. This journey has given us unique perspective into that. We should be thankful that if this is the bump in our road at this point, it’s a great bump to have. We know that in our heads, but it’s tough to feel that in our hearts. It’s like we’ve been running a marathon, we’re approaching the finish, and then someone moves the tape just a quarter mile further. It’s only a quarter mile, yes, but after 26.2 it’s enough to make you stumble. And no, I do not have any personal experience running 26.2 miles, but I’ve seen people cross the finish line who have and they don’t ever look like they would take kindly to someone extending it.
Here’s to a few more days with our communication looking like:
You can pray for us this week that:
taking his line out at the same time as the BMA is not an issue. For some people, that’s a superstitious thing - taking the line out before you know MRD results. But, the superstition is born out of the reality that there is a chance you take it out too soon, he has MRD, and it has to go right back in.
our stuff will have a smooth move back to Charlotte and, similar to the line removal, unpacking it there will not prove premature. Jennings and I can survive here on a carload, so we are going to go ahead and have our stuff sent back on Friday per the original plan.
his cough clears up, at least enough by Monday that he can be sedated without issue.
we see some movement in the “proactive therapy” discussions…they’ve been seemingly stuck in neutral for a few weeks now and it feels like we’re playing with fire.
we make it through this added separation time with uplifted spirits and that the Welcome Home party can be rescheduled.
Clockwise from top left: Reunion with Miss Tiara! Henry then Smally meeting their baby cousin Margot for the first time. Caroline working on some babysitting skills.
“Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God, for I shall again praise him, my salvation and my God.” Ps 42:5
#allinforjennings