Summer Comes to a Close
And with it, an epic season for the books. This will give Summer 2019 a run for its money for best ever. In 2019, we had Jennings’s Make-a-Wish trip to Seaside, FL, a mommy-daddy trip to Jamaica, a weekend in NYC, and our first trip to Manteo. It was similar to this summer in that it was our first one with Jennings fully healthy following a bone marrow transplant. We did all the things. And come November 2020, we were glad we did. We did them all again this summer and no matter what tomorrow holds, I will still be glad we did.
August started with a visit from my brother and his family. They live in Germany and, due to COVID & life in general, the last time we saw them was right before they moved over there in 2019. The twins were stumbling toddlers back then and they were a family of four (now five).
That’s his family in the top left and their newest addition, Lottie, in the hat wondering why someone would intentionally smash her hand into a perfectly good birthday cake. I don’t get it either. I think she celebrated her actual first birthday somewhere over the Atlantic, but they forwent the party on the plane and we got to celebrate her turning one with my parents and all the cousins. That’s more cousin fun on the left-hand side. We all wish pictures like these could be taken more often, but we were thankful to get so much time with them over the week they were here.
The righthand side is the big kids getting ready to leave for their first overnight camp. It was their first year getting to attend Camp CARE (cancer ain’t really the end), which is put on by a local organization and is an annual camp for kids & their siblings who have or have had cancer in the Charlotte area. They spent five nights at Camp Lurecrest and had an absolute blast.
While the bigs were away at camp, I snuck away first to a work conference in Wilmington, then came home for a night, and left again to go on a father-son golf trip with my dad.
As soon as he asked me about it, I knew I had to say yes. We hadn’t done anything like this in years and I jumped at the chance to spend some extended time with him, especially with it being a golf trip. We went to Big Cedar in Missouri where the founder of Bass Pro / Cabela’s has developed some breathtakingly beautiful golf courses. One is Tiger Woods-designed Payne’s Valley, which has an actual 19th hole pictured in the bottom right (yes, it also includes an actual bar). They film your shot and if you make a hole in one, you get an autographed poster of the hole and a $1,000. You then drive your golf cart back to the clubhouse on a mile-long cart path that winds up the mountain through rock caverns and across springs. Pretty special, and a place I never would have gone on my own.
Needless to say, L was a little smoked by the time I made it back from the trip. She basically had six days solo with the twins and then had to welcome the big kids home from camp on her own. Relief came in the form of one last family trip to close out the summer. We went down to Ocean Isle Beach for literally the last week of the kids’ summer. It was the only week we could get the house where we didn’t already have a conflict, but ended up being a perfect time. It gave us something to look forward to all summer and helped us close it out with some intentional, memory-making family time.
Clockwise from top left: 4 out of 4 clean & dressed for dinner out, 0 out of 4 looking at the camera; the Sunset Slush beach cart and probably our entire family’s favorite part about OIB; the girls finally being rewarded for a week of evenings spent staking out turtle nests - on one of our last nights we got to see a full nest hatch (the dark speck there is “Crush” making his way to the ocean); the best catch of the week, which is not saying a whole lot.
With summer successfully in the books, we sent all four back to school this week. Well, the twins only went one day but it counts for something. They are doing Pre-K at the elementary school, which means we will have two years in a row with them all at the same school…the only year(s) that will occur. Lauren, especially, is thankful for the routine and time this will provide to get to the projects, thoughts, and to-do’s that seem to always find the back burner with four kids around.
Jennings has gone since my last update with no medical updates. He had a couple days before the beach where he was fairly sick with a high fever and cough. Surprisingly, he tested negative for COVID the entire time, even with a PCR test at the recommendation of his local oncologist. He is Day +539(!) today, post-transplant.
Next week, he will have labs done here locally…typical CBC, chimerism check that will go to St. Jude, and research labs for the RESOLVE trial. The research labs will represent his 1-year post-trial labs. Another incredible milestone we are so thankful to celebrate.
In preparation for the lab draw next week, we heard from the research coordinator at Children’s National this week. He was mostly writing to let us know to be on the lookout for the lab kit in the mail, but he also included a recent publication on the trial from Blood Advances journal. It’s an early update on the preliminary results available from the phase 1 study, which primarily focuses on safety through dose-escalation. In short, the treatment (infusion of modified / “trained” T-cells targeting specific markers typically found on AML cells) is safe. Data for the article is from no later than December 2021, so we generally knew this going into the trial. The publication does also speak to the early results, but there is not a lot of data to draw from given that it is a phase 1 trial. One arm of the trial, the one Jennings is on (though his data is not included in the results), is studying whether or not the treatment improves “event-free survival” when given to high-risk patients six months after their transplant.
Overall, it is an encouraging article, but not in a slam-dunk kind of way. More like, to continue the sports analogy, we are tied at halftime, but only after overcoming a significant double digit deficit early in the first half. For one, the results are only for 23 patients who had received the treatment early enough to be included in this data. Also, it didn’t work for everyone. And, you have to be really careful how you define “works” in this world. Often times, extension of life (reaching six months, one year, two years) is considered a victory in and of itself in trials targeting high-risk diseases. To get at the encouragement seemingly requires a medical education. You find yourself wading through endless complex statistical analyses, deciphering terms like one-year overall survival (OS) versus leukemia-free survival (LFS) versus event-free survival (EFS), and trying to make sense out of confusing phrases. Here is one of my favorites: “….at the time of submission [of the article], with 9/12 patients [in a certain category] remaining alive. Eight of the 9 evaluable patients were alive at 1 year, and of those, 5 remained alive and in remission at the time of submission.” What?
In the “preemptively treated” arm, no patients experienced early relapse, which is pretty astounding considering they are all extremely high-risk. Jennings would add to that positive data as early relapse is defined as relapsing within 6 months. However, the median survival data for this arm is still measured in “+ days” that fall in the 700-900 day range depending on which type of “survival” you’re referring to. Never would have thought there would be more than one type of survival before all this, but who am I?
This is all very positive, but it does still mean that some patients experience very late relapse. Jennings and his remission remain in God’s hands. We try to take in information like this for what it is, be thankful that advances (however small) are being made, and continue to cry out to God in prayer. To that end, would you be willing to commit to pray with us for Jennings’s continued, life-long healing on the anniversary of his RESOLVE infusion? It is coming up on Saturday, September 17th.
As always, thanks for reading, please pray for Jennings, and we’ll be back towards the end of the month with another update, complete with results from next week’s appointment.
“This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:24
#allinforjennings