In Between Now and Then

Closer to the “then” (at least we hope & pray), but we’ll get to that. It’s hard to believe it’s been three weeks since I’ve posted an update. It’s ok; I’m glad that you enjoyed the break. There’s been plenty going on and most of it, thank the Lord, has been positive.

Not long after the last blog, we got word that his chimerism from the Memphis trip was 100% and that the long, lost RT-PCR results from his marrow were negative for the MLL mutation. Both resulted in big sighs of relief.

Jennings sailed through his week of chemo. The daily shots were tough; it was a good sized needle and a decent amount of liquid. The Child Life specialist at the clinic came up with a 2-minute timer idea to help. He had two minutes to prepare and / or elect to go ahead with the shot on his own accord. When the timer went off, it was go time. It didn’t make it any easier, but it at least sped up the process. He showed virtually no side effects from the Azacitidine, only complaining that his tummy huwt a couple of times several days after the cycle. His white blood count and ANC dropped, but not so far as to make him neutropenic. We ended up getting the IVIG infusion the week after the chemo and did labs to check counts from the same IV, which helped space out some of the needles.

Clockwise from top left: enjoying some juice in clinic while the hand IV delivers the immune juice, IVIG. Feeling strong - Jennings 5, Chemo 0. The aza injection site several minutes after the shot…all the proof you need that this stuff is poison. So good to see Dr. Bolen…she’s been there every step of the way since Day 1.

Jennings and Lauren just got back from his scheduled check-up in Memphis this week. His labs look pretty good; his counts are still down a bit from the aza, but nothing concerning. Aimee and the BMT team were amazed at how good he looks. It had been three weeks since they’d seen him. His hair has grown back to the point where you can’t see his scalp and his weight is back up to around 19 kg, which is close to what he was at relapse. The pulmonologist saw him and said his lungs sound great. He’ll stay on his current breathing treatments as they don’t want to rock the boat heading into respiratory virus season, but that was good news based on stopping the voriconazole. Not only did we lose the painful medication administration schedule with that drug, but the severe redness in his face and hands disappeared after a couple days. We had been constantly on edge about sun exposure and sunburn with his face and hands seemingly always being fried. Turns out the vori was the culprit, making him much more susceptible to the sun’s effects.

Here are a few from the Memphis trip 👆. It was a longer visit this time around due to rigid clinic schedules that don’t work well for out of town patients. He had pulmonary appointments Monday morning and that clinic is only open Monday mornings. Then he had nothing until Wednesday morning when he saw Aimee; she only sees patients in clinic on Wednesday mornings. So, for two half days of appointments, they had to fly out Sunday evening and stay in Memphis until late Wednesday.

Lauren took advantage and they were able to make a fun trip out of it, opting to stay off-campus with Lee & Dave where they could more easily do non-medical fun stuff…like play in the pool with little Memphis friends and go to dinner with, as Charlotte would say, badult Memphis friends. That’s travel Jennings in the top right with his newest accessory, the neck gaiter. As you can see, it is not employed as a face mask. Instead, he says it makes him feel like a ninja. That’s the ninja in the bottom left knocking out another pulmonary function test. All in all they had a great trip and got good results. We are still waiting on chimerism. Oh, and guess what? He’s still positive for parainfluenza. Hooray x100 for the decision to stay off campus as the isolation protocols continue.

I mentioned last time that we would be attending the Claire’s Army gala following this check-up visit and just prior to leaving on our much-anticipated beach trip. After much deliberation, we have made the tough decision to not attend the event. We are both quite sad about it…me so much so that I could only get half-dressed 👇 to record a welcome message that we were supposed to give live & in-person.

I forgot and went outside before changing. My neighbor was out and nodded in immediate recognition, “Skype call?” “Yeah, something like that,” I said.

The reason for our decision is COVID. We are vaccinated, but plenty in NC are not (including Jennings). We would be indoors in a situation where lots of people would be coming up to talk to us because of our story. We were just not comfortable with that risk. A) because Jennings is still immunocompromised in some senses. It can take up to 12 months for his new immune system to get up to speed where it can handle common, everyday exposures. Also, there is a big unknown about what would happen if he were to get COVID. The limited data that is out there suggests that only about 70% of post-transplant patients survive a COVID infection, compared to about 98-99% of the total population. That’s not a great number…and B) he is enrolled in a clinical trial and is about a month out from receiving the treatment.

The trial is the RESOLVE study and we have been mostly silent about it for a host of reasons. In any event, it is, in our heavily researched opinion, the best shot at a preventative / proactive treatment aimed at eliminating relapse. The title is fitting though it is a somewhat convoluted acronym: Research of Expanded multi-antigen Specifically Oriented Lymphocytes for the treatment of VEry High Risk Hematopoietic Malignancies (RESOLVE). The “very high risk” part is a sobering reminder every time I see it.

On September 1st, Jennings will get a single infusion of my cells at Children’s National in DC. These cells are TAA-T cells, which stands for tumor associated antigen T-cells (T-cells are a type of lymphocyte). The hope is that they are trained assassins. They are “manufactured” in such a way to target three specific antigens that are typically over-expressed in 95% of AMLs. These T-cells then kill those cells if they encounter them, preventing the antigen-expressing cells from proliferating into full blown leukemia. I donated blood for these cells a little over a month ago and they have been in the lab being manufactured ever since.

This is very much experimental and there is little conclusive data yet available. However, it represents, in my opinion, the future and the hope of bringing pediatric AML cure numbers closer to the current pediatric ALL cure numbers (~90%). It is both targeted (directing treatment to AML cells, not all cells like chemo) and non-toxic (it is essentially a DLI, a boost of my cells). The greatest risk is GVHD, but that risk is even less likely than what would be expected with a normal DLI.

So far, there have been 23 pediatric patients enrolled on the trial. Twelve of those are adjuvant AML patients, which is Jennings - the goal is to prevent relapse of AML currently in remission. Nine of those 12 are “evaluable.” Eight of those nine are still alive 12 months after their infusions. We are talking small, unpublished numbers. But, these are numbers that are much higher than historical survival curves would tell you to expect.

So, there will be no gala for us this year. But, there will be a beach trip and that brings us to the “then.” This trip has been a mile marker for us in this marathon. Focus on getting to it; don’t look past it, just get to it. Then……then what? We are hopeful this trial helps cement his cure. That fall brings a sense of routine and we are able to get into a groove. We have felt like our lives have been up in the air since returning home. For two Type A, scheduler, things-in-their-place people that’s a tough spot to live in.

Add on top of that, we have both been scared. For me, much more so than last time. I am not a fearful or anxious person, generally, but I have thoughts…sometimes the wake-up-in-the-night kind of thoughts. One of our St. Jude AML buddies just relapsed. He’s been at this for five years; four transplants and now five relapses. He’s a fighter and we pray daily for a miracle. Lauren recently attended the funeral of a beautiful girl here in Charlotte who was terminally ill. We are part of a community that, like it or not, faces the reality that some kids do die, as Danny Thomas would lament, in the dawn of life. That creates a sense of fear at times that can be hard to escape.

We have both been in counseling, one longer than the other. You can guess by your knowledge of our emotional intelligence. Mine has recently used the analogy of a house for our lives. Ours has been imploded. There is a pile of rubble on the slab. When you go to rebuild where an imploded building once stood, you can’t just start building. First you have to clear the rubble and draw up the plans. Then you can start building. There is plenty of rubble and we are in the process of working through it. It is a struggle at times because we do not if, or when, the next storm, or the next implosion, is coming.

You can pray for our time at the beach. As I’ve said, we’ve looked toward this for a while and want to unwind, be together, and enjoy one another. You can pray that the trial happens on schedule and that it is effective. It is relatively new and experimental; they really don’t know a) if it really works or b) if it does work, how long does it last? Continue to pray for his cure. Yes, we are home. Yes, he is looking more and more “normal.” But this disease is ugly and relentless. He is a long way from a “routine,” worry-free lab check. You can also pray for Lauren and me as we process through the rubble.

If you made it this far, wow - I’m impressed. And here are some pics of the lighter summer moments we’ve had in between…

From left: Charlotte loves the pool, specifically jumping in….over and over and over. That’s one of her more graceful moves. Smallish bear catching smaller fish (wearing a thick, long-sleeve Elsa dress in the middle of summer). Caroline’s art camp creations. Jennings with a real whopper.

On the left, Carowinds! More pool time on the right with the girls sizing up the splash pad for their next moves.

We’ve had fun watching the Olympics together as well. Charlotte, as referenced above, likes to put “b’s” in front of random words. She’s been hoping that the badults don’t borget to let her watch the Balympics. We may be in trouble in a few years…we were watching the men’s high bar gymnastics competition. The American contender finished his routine and she slyly said, “I love dat boy.”

And in other twin news, Henry has himself an imaginary friend. Temps. He loves to regale us with Temps’s latest adventures at any chance he gets. And he’s getting fairly good at creating chances even where they don’t exist.

We’ll check in with y’all on the other side of the beach.

“Fear not, O Zion; let not your hands grow weak. The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing. I will gather those of you who mourn for the festival, so that you will no longer suffer reproach.” Zeph 3: 16-18

#allinforjennings