Much Ado About Nothing
Praise the Lord. We had quite a scare with the 99% chimerism and all of the testing fallout that followed, but as results rolled in last week, the good news kept coming. His MRI was negative for any sign of tumor-like growths or infections. His bone marrow chimerism was 99-100% which is considered perfect. The 99-100% is as good as gets because some of the “scaffolding” cells in the bone marrow get collected along with the actual marrow. The marrow should always be all donor, but the other cells are still all Jennings. His peripheral blood chimerism result from last week also jumped back up to 100%! That means that either there was an error reading the previous result, or the transplant itself did its job and the donor cells eradicated the other cells. The last result to come through was the genetics and it was also negative for the MLL mutation. Couldn’t have gone any better. 👍👍
So, the DLI was not needed after all. Both of the chimerism results came in as I was donating, so those cells will be frozen and kept in case he ever needs a DLI in the future. I, for one, am glad to have the collection done. It ended up taking almost as long as the original donation, although that was due to how slow the machine had to run. My blood started to clot inside the tubing in the machine, which means it has to run slower. This seemed counterintuitive to me, but as my nurse kindly explained to me, the slowness is so that more anticoagulant can be mixed in. In any case, I was not a fan and almost exploded my bladder by the time it finished.
Jennings needed a boost of IVIG again, so he was in the middle of that when I finished up. That meant Lauren and I both got to meet with Aimee and Sophia (one of our NPs) together. This was the first time we’d all been in the same room together this time around. We celebrated the good news and talked through the couple updates on the proactive therapy. She opened up a little on the Saturday morning email with the MRD results. She knew she was going to be out of town Saturday, so she took her laptop with her so she could continue to check to see if the report was back. Said she wouldn’t have been able to wait until getting home to check. It’s just nice to hear when people who take care of your son also care about him and are personally invested at some level.
This week has been lighter from an appointment standpoint. Aimee and a couple others are out this week, so we didn’t have the normal Wednesday clinic visit. Jennings had his weekly labs drawn yesterday and his CBC continues to look great. Still waiting on the chimerism result for this week. Today he had an appointment to get his dressing changed and that was it. The only reason we kept it on is that his sweet nurses in clinic had a surprise “surprise egg” to give him, otherwise we could have just changed it at the house. They love him so much…they went out and made him a surprise egg, buying toys with their own money, and then wrapping each one individually inside the giant egg. Pretty special. Tomorrow he has PT in an attempt to get to the bottom of his leg pain. My guess would be shin splints or something like it since the MRI revealed nada.
That’s his clinic nurses in the top right. If you’ve ever been around kids that watch a little YouTube, you know all about the surprise eggs. That’s Kitar Jennings rocking the IVIG infusion in the top left. Bottom: the donation in progress, this time with an inspirational visit.
We are reaching that point where we want to be back home. It took longer this time, but I think we’re there. School is out. We’ve done all the things. It’s time.
We love Memphis. We love the community we have here, the friends we’ve made, and how familiar it feels. It is truly a special place to us. But it’s not home. After so long, that begins to wear through.
J even seemed to share the sentiment when he announced a spontaneous “show” with the toy microphone. It was after lunch the other day and, out of nowhere, he said he had a show he wanted to put on for us. The theme: cancer is gone. Charlotte even had a singing role, but it didn’t materialize. She smashed her lip with the mic and…game over.
Of course this triggered all kinds of anxiety. The last time he shared out of nowhere about his cancer was with his kindergarten class the day before he relapsed.
With these sentiments we do now turn our attention to moving back to Charlotte. Jennings is at Day +83 today (Wednesday). Considering how well he is doing and the lack of GVHD or other complications, heading back to Charlotte around the usual Day +100 is looking as good as ever. We’ve started planning out the logistics now that it’s looking more real.
Caroline has a camp in Charlotte the week of June 14th that we optimistically signed her up for back in the winter. So, the plan is for all of us (minus Jennings) to drive back to Charlotte the Saturday before camp. Jennings will still have his “Day 100” BMA and several other appointments the same week as C’s camp. I’ll drop the fam at the house with the van and then fly back to Memphis to finish out the appointments with Jennings. We should get the “all clear” on Wednesday of that week and potentially even take his line out at the end of the week. Regardless of the line decision, we will drive back to Charlotte that Saturday, June 19th (which fortuitously will be the actual Day 100). I’ll pack up our obscene amount of belongings that week as well and send those back via Uhaul that Friday. Hopefully we’ll get a few weeks in Charlotte before we’re on a plane back out here for his first check-up. Last time around he was seen every two weeks for several months after we went home. Aimee has seemed to be willing to space out the Memphis visits a little more this time with more frequent follow-ups in the Charlotte clinic in between. We’ll see.
Hopefully you all had a great Memorial Day weekend and were able to get into the summertime frame of mind. We tried here, but the high was 67° on Saturday.
Memorial Day Weekend, Memphis-style. Clockwise from top left: two smiling siblings at the zoo on Monday. Finally getting to ride the train at the zoo, hurray for the lifting of COVID restrictions. Sunday picnic by the river. Friday night movie night before they all got kicked off the couch. Trying to stay warm on Saturday playing “hiking monsters” while climbing the hill to the top of the Mud Island Park amphitheater.
Oh, and we’re potty training the twinks. Here’s to all the juice you can drink on no pants Wednesday. 👆
“If you lie down, you will not be afraid; when you lie down, your sleep will be sweet.” Prov 3:24 Trusting and praising the One who makes that true.
#allinforjennings