Endurance
It’s been a month since the last entry. That’s hard to believe. It seems that it wasn’t that long ago when I was posting weekly, if not even more often. It is such a blessing to be at a point where not much changes week-to-week. I will do my best to keep the updates coming monthly.
The first time around, I tapered off the Caring Bridge updates about 8 months or so post-transplant and the last post I wrote was the 1-year anniversary of his first transplant. The plan is to take a different approach this time with the monthly check-ins being a regular thing. The keyword there is: plan. Jennings is still five months from his 1-year anniversary for transplant #2, so I might be a little bold in making such a (Lord willing) long-term commitment.
Part of this choice is out of a self-imposed sense of duty. You all have faithfully followed Jennings and our family’s story and I feel a sense of responsibility to keep you updated. The other part of it is selfish. As I said in the last update, we are down to prayer. If we ever need anything more than that, we are not where we want to be. Hopefully these touchpoints inspire that prayer.
Today, he is at Day +221. He is not considered statistically “cured” until Day +1,825. Public math is dangerous, but I feel confident that’s a lot of days from now. I shared previously, I think, that when he relapsed he was at Day +950. That was only halfway to the cure mark and yet, it was so long that, back then, we had moved on to the next chapter in his life, in our lives. Even that waypoint is a long time from now this time, and one, that when we get there, will feel much less safe & secure.
The point is that he will continue to live with a great threat against his life for a long, long time. The path from here is one of endurance. Being faithful in prayer and thankful for the gift of each day together. Holding the anxiety around Jennings’s future in tension with the joy that we have at the generous mercy of God for giving us today. Failing often at striking the balance yet enduring in striving for it. We plead with you to pray with us for his lifelong, long-term cure and hope that these check-ins will be a reminder to do so.
We’ve been celebrating the changing of the seasons, settling into life as a family at home 👆👇. Above, clockwise from top left: capitalizing on the first borderline cold-enough-for-a-fire night…only one hot dog was harmed in the making of that film. Corn swimming, which the kids thought was on par with actual swimming…I think Aimee would rank it somewhere lower down the list of unapproved post-BMT activities, probably just below dumpster diving. The obligatory pumpkin farm kid picture, 0 out of 4 looking at the camera. An unintentionally private hayride.
Below, clockwise from top left: 2 out of the 3 stooges hidden in plain sight at the Fort Mill scarecrow hunt. A now 38-year old woman (happy birthday L…you’re still my favorite) in sheer terror on a child’s roller coaster, one tame enough that smally bear is tall enough to ride. Fun with bubble guns in clinic. Jennings participating in school picture day and as a bonus, he got to meet & tour his class.
As you can tell from the pictures, the past four weeks have been great. Medically, Jennings continues to do very well. He and Lauren took a trip back to Memphis at the end of September and the entire team there was impressed by how good he looks. He even managed to clear the parainfluenza. Well, clear is misleading. Maybe it would be more accurate to say that he swapped it for rhinovirus. Same symptoms, different virus, and thankfully, different infection prevention measures (no isolation!).
He and Lauren got to see some good Memphis buddies, got a fresh picture of the M-bridge (complete with traffic back on it), and he picked up right where he left off in body-slamming & arm-wrestling his St. Jude nurses. His chimerism from this visit came back at 100% and the team has moved him to monthly checks for that. That’s a little nerve-racking for us - CBCs tell you some information, but the info is too much of a lagging indicator to catch a potential relapse early.
He’s had weekly lab visits here in Charlotte as part of the trial. He had one week in there where he needed an IVIG boost, but other than that it’s been pretty routine. As routine as it can be with weekly needle sticks and drawing 30 cc’s of blood for the trial plus enough to run a local CBC & metabolic panel. That’s a lot of blood for a little guy, but fortunately it doesn’t seem to phase him. He has one more week of this, then the bloodwork for the trial research starts to space out….1 month, 3 months, 6 months, 1 year, etc. The next trip to the Jude is scheduled for December, but we’ll get another chimerism drawn locally at the end of October.
The next update, Lord willing, will be in a month. Yes, I know I already said that. I’m repeating it for myself, so I remember to do it…and emphasizing it for you, so you’re guilted into reading it. To incentivize you, we should have some fun surprises to share. If you follow L on Instagram (which you should if you don’t…unless you don’t have an account…like me), then they will be ruined by the time you read this, but we can both pretend like you’re surprised.
Before we go, one more picture 👇
This is Jennings visiting the 2021 St. Jude Dream Home for the Charlotte area that was dedicated to him. Messages of hope and healing for Jennings were written on many of the 2x4s that framed the house. Then, in one of the upstairs rooms, they had a local artist paint a Jennings-inspired mural on the wall - a giant Optimus Prime head. Many thanks to Jeff Newton and Newton Custom Homes for honoring Jennings in this way…and congrats to the winner!
“Rejoice in hope, be patient in tribulation, be constant in prayer.” Rom 12:12
#allinforjennings