So much

for the “blah week” I apparently prematurely wrote about last week. No sooner did you probably read the update than everything got a bit intense.

Thursday morning, Lauren took all of the kids and Jennings for school drop-offs, so I went for a run. When I got back and checked my phone, I had a text from L that Aimee had called her. His chimerism result from last week had dropped to 99%. While I waited for her to talk again with Aimee and then call me back, I fumbled around the house not knowing what to do but not able to sit still either. She finally called back with what we figured: they needed more information. So, the team jumped through some hoops and got him a BMA scheduled for the following day, Friday.

Of course, this was also the weekend my parents were coming out for a visit. Friday morning, Lauren and J left early to get to St. Jude for 7a labs and a pre-sedation check before the procedure. I took the rest of the gang to go pick my parents up from the airport. The procedure went smooth and Jennings continued his recent streak of waking up in a decent mood. So much so that by the time we were getting back from the airport, we had a welcoming party out on Island Drive. Jennings was jumping up and down in excitement when he saw our car.

I talked to Aimee a short time later on Friday around lunch. I had emailed her late Thursday night once the kids were all down and we were able to get our thoughts together. There were two main things I wanted to discuss. One, how this would play into the proactive treatment(s) we have been discussing. And two, could we move up the timeline on a potential DLI.

The team wanted to be proactive and get the ball rolling on a DLI (donor lymphocyte infusion) in case it is needed. This is basically a boost of more cells from me to Jennings. You may remember this was one of the two big picture treatment paths we were considering way back when he relapsed. At that time, we had the option of giving him a DLI from Caroline’s cells, his first donor. Typically, though, DLI’s are used to salvage a transplant that is starting to trend in the wrong direction. To that end, the BMT coordinator had called me Thursday afternoon to let me know I would start to see appointments popping up on my calendar. The donation date she gave me was June 2nd. A full week too late in my opinion, hence the email to Aimee.

We had a good call and she was receptive. We both acknowledged our different roles and how at times, they mean we have to be less than agreeable. It’s not personal, just necessary. Hers is to do right by all patients and make the best decisions possible for each of them given the overall availability of resources, etc. Ours is to fiercely advocate for Jennings and make sure protocol or standard procedure is not getting in the way of a critical piece of his treatment. Fortunately, I got a call late Friday from the coordinator again making sure it was ok to move up the DLI donation process to this week.

We were on pins and needles for the rest of the day Friday. On our call, she also outlined various scenarios based on the results from the aspirate. She had already spoken to the pathologist working Friday who would be reading Jennings’s MRD results and let her know the importance of the information. Given that, and the fact that his procedure was first thing in the morning, we all thought we would get word on Friday. But, the call never came. By 6:15p or so, we gave up and realized we would be trying to sleep Friday night with a huge question hanging over us: does he have disease or not?

Quick explainer on that question. Chimerism is a measure of who’s cells are making up your blood. The goal after a transplant is for them to always be 100% donor derived cells. The 99% result meant that 1% of Jennings’s blood cells were derived from his own stem cells, not mine. That 1% could be one of three things: 1) the AML has already come back and is in that 1%, 2) normal, healthy Jennings cells have come back, or 3) there was an error in the test. The worst-case scenario is #1 and it was the MRD from Friday’s bone marrow that would tell us yea or nay.

I got up Saturday morning and was downstairs while everyone was still sleeping. I heard my phone buzz but honestly didn’t think anything of it. But sure enough, when I checked it 15 minutes later I had an email. From Aimee. Subject: good news! Praise the Lord. As Lauren wrote back, it was the biggest exhale ever. It does not mean we know the answer between #2 and #3, and #2 would not be good as Jennings’s normal cells are what eventually gave way to AML. But it does mean we are not already dealing with active disease, which would be a very tough spot a little more than two months post-transplant.

That little victory gave L and I a huge boost and helped us enjoy the rest of the weekend. We had planned a night away on Saturday with my parents here, so it was a wonderful blessing to be able to celebrate a small win versus continuing the stressful waiting game, or worse yet, having our worst fears confirmed.

Needless to say, this has already been a much busier week than we have gotten used to. Jennings and I both had labs drawn first thing Monday morning. Mine in preparation for the DLI donation and his to recheck his peripheral blood chimerism. His CBC and chemistries all looked good from the labs and we were able to send my parents off to the airport at least knowing that. The main point of them, though, is the repeat chimerism which is not yet back. We are also still waiting on the bone marrow chimerism as well as the genetic findings from Friday’s BMA. That chimerism will tell us the percent breakdown of cells within his bone marrow, whereas the other test is only looking at cells in his actual blood. The genetic findings will tell us if any of the Jennings stem cells have the genetic mutations associated with his specific AML (the monosomy 7 or MLL). If there are cells present with these mutations, they will eventually devolve into AML.

Today, Tuesday, he is being sedated again. This time for an MRI. The team is concerned about the shin pain (bone pain) that earned him the x-ray last week that I mentioned briefly in the last update. They want to “have as much information as possible,” which is code for: “we want to rule out extramedullary tumors.” It is rare, but in some cases AML can relapse in the form of tumors in other locations in the body and do so without relapsing in the bone marrow. You can pray this is an easy one to cross off the list.

For now, we know there is no MRD in his bone marrow. We wait for a host of other results that will tell us how serious this is…either confirming a drop in his chimerism or potentially classifying this as much ado about nothing. I will go ahead with the DLI donation tomorrow while we wait. If it turns out that he does not need it, the cells can be frozen and will be available should he ever need a DLI in the future. It’s the same procedure for me as the first donation, just no G-CSF (the shots I got for a week before the donation) and maybe a little shorter than the five hours it took last time…since L will be manning the jug again I think she’s hoping so just as much as I am.

Picture time! This was Friday. Jennings starting the day in the top left, slowly waking up from his umpteenth sedation. The rest are from a Mississippi River riverboat cruise we took my parents on. It was a little chaotic, like anything with four kids, but neat to see the river from the river. The highlight may have been the up close & personal view we got of the cracked “M-bridge” that has closed I-40 as it crosses from Tennessee into Arkansas.

This is a few from Sunday. We all went to the zoo, then took a break from the heat, then went to eat outside at Hopdoddy’s. The top right is my favorite. Ah, sisters.

Our Memphis peeps put together a little “going away” celebration with everyone on Monday. Hopefully we didn’t jump the gun on that one, but calendars get tough in the summer and this was the last time we could get everyone together before we (hopefuly) make it back to Charlotte in late June. We have been loved and held up in incredible ways by some truly amazing people over the past three and a half years. That is especially true of the our community here in Memphis.

We have been starkly reminded of God’s sovereignty over the past few days. Lauren’s sweet grandmother sends her a verse almost every day. Last Thursday, before the call, it was Proverbs 16:9, “The heart of a man plans his way, but the Lord establishes his steps.” We had just begun talking about the logistics of moving home and had even started letting ourselves think about a potential Disney trip later this fall. Quite fitting when you contrast those thoughts against the result we got Thursday morning. His ways are higher than ours. His plans are better than ours.

This morning I read Psalm 118. Verse 6 says, “The Lord is on my side, I will not fear.” We are undergirded by Jesus. He is our rock. We have moments of fear and doubt, but we do not fall through. We land solidly on our rock. He is on our side.

Pray with us for these results, for this transplant to be his cure.

#allinforjennings