Tied at Halftime, Indeed

I used that analogy in the last post to describe where Jennings is in his quest to beat AML after a second transplant. We were reminded a couple weeks ago just how appropriate it is.

Jennings had his check-up appointment in Charlotte on September 8th. Lauren took him this time and he did great with his poke. Big praise for how far he has come in dealing with the adversity. His CBC looked fantastic and, for some reason, that felt like an especially big relief for both of us. The next day we got more good news in that his IgG level was still holding strong. That was encouraging given that its been steady for three checks in a row now without any IVIG infusions. That was the last intervention he had been receiving post-transplant.

It was the following Wednesday when we finally got his chimerism results from St. Jude, longer than the typical wait.

The result was 99-100%.

As good as that might sound, it’s not a solid, definitive 100%…and so, not the result we wanted. Chimerism measures the percentage of my cells making up his blood cells vs. his own cells. His cells are the ones that developed AML, so those are unwelcome. The result in and of itself could be harmless. Or, it could be the first sign of the beginning of another relapse.

His transplant team in Memphis would say they are not that concerned. The first step is to re-check it - the 99-100% could be an anomaly, could be a bad read in the lab, etc. That is, after all, what happened the only other time he has not had a perfect result following this transplant. He had this same result about two months out while we were still living in Memphis. We panicked, got ready for a DLI, and did a bone marrow aspirate. Turned out his chimerism was fine and was back at 100% at the re-check.

His oncologist here used the word “unsettling” to describe the result. That’s how it landed with us. Even the email from his NP at St. Jude was matter of fact instead of containing the usual 3-4 exclamation points and party emojis. We have a previously scheduled follow-up at St. Jude in October, so we will re-check then.

We have consciously, intentionally tried to keep this from stealing the four weeks from us before we know anymore. At times this is easier said than done, but we have both done a good job, I think.

I had counseling last week and this turned into the main topic. He used the analogy of a foreign film he had seen that is set during WWII. A bomb falls into the courtyard of an orphanage and lies there unexploded. The kids and adults that run the place live with it there, day in and day out. The kids are oblivious to its destructive power, yet the grown-ups are keenly aware of its potential.

We live with an unexploded bomb in our house. It could go off at any moment. It could never go off. Some days, it is easy to walk right by and ignore it in the busyness of life. Other days, it’s hard to take our eyes off of it. I think it’s good to be able to name that and acknowledge that we each have to deal with it. God gives us the grace to do so, and we strive to give that to each other. As the Memphis trip approaches, I’m sure that will become harder, but we are praying and trusting in Him.

Here’s a few pictures of fall activities that are in full swing…and helping us keep our minds occupied.

That’s our team-level gymnast in the top left, an official member of the Chalkettes. Jennings is sticking with baseball and hitting has finally clicked. He’s putting the ball in play more often than not 🎉. Henry is trying out soccer…that’s him in the “freeze” position. I know nothing about soccer, but apparently yelling out kid foods is most of coaching. “Mac & cheese!” means to do toe-touches on the ball. “Cereal!” is dribbling between your feet. 🤷‍♂️ Our smallish dancer is back for another season, but we think her personality is leaning more towards a hip-hop style, so this might be the last season of ballet.

Here’s a few more of us refusing to let this month be stolen by the evil one. 👇

The top two are Caroline & mommy on a one-on-one trip to Charleston. She is at an age where that time is special and L is so great about intentionally capturing it. They had a blast and I used the rainy Saturday to indoctrinate the other three into the joyousness that is college football. That’s two fishermen in the making on the bottom right. They were biting that evening and they kept Gigi in a constant rotation of bating hooks. The weather is finally turning here too, so we’ve been outside on the patio almost every chance we get.

L & J head to Memphis on October 11th. He will have all his labs drawn on Wednesday, the 12th. Thank you for all those who prayed on the 17th on the anniversary of the RESOLVE trial. Please continue to pray with us for his cure; that this is just another false alarm, blip on the radar. We’ll be back with an update later this month.

I read Psalm 130 this week. “Out of the depths I cry to you, O Lord! O Lord, hear my voice! Let your ears be attentive to the voice of my pleas for mercy!….I wait for the Lord, my soul waits, and in his word I hope…O Israel, hope in the Lord! For with the Lord there is steadfast love, and with him is plentiful redemption.” Psalm 130:1-2, 5, 7

Even when we feel like we are crying out, maybe not even being heard and having to wait - oh it’s so hard to wait, we can have hope. God is steadfast, trustworthy; faithful to redeem.

#allinforjennings