On the up and up
Jennings continues to do great. Compared to where he was last time at this stage, it’s amazing. He had a few easy appointments scheduled for Friday afternoon…school, occupational therapy, child life music therapy, psychology. Almost all of those are mostly playtime for kids his age, at least that’s how it seems to him. But Friday morning they added a random nurse visit. With no corresponding labs scheduled, we were skeptical of their intentions. Sure enough, the sole reason was to check his weight. And Jennings said ok, if that’s how you want to play. Bam, 17.75 kg. Back up to where he was with the tube in. He was super proud when they got home, trying to tell me while making one of those faces where you’re trying not to smile.
With the weight and his eating both headed in the right direction, we don’t have many concerns at the moment. One, that almost seems like grasping at straws, is that he is extra sniffly today. The team thought it might be allergies and started him on Claritin, which seemed to help over the weekend but the congestion is back in force today. A minor cold is not a huge deal, but we don’t want it progressing to his lungs or causing a bigger immune response.
Speaking of immune response, he will also start weaning off of the immunosuppressing medicine he’s been on since cell day. It’s called Sirolimus and it is given to tamp down the effects of the new cells as they enter his body and begin to grow. It keeps them from getting too active and causing GVHD. With his first transplant, he was on an immunosuppressant for 100 days and then the wean started. With second transplant and relapse risk being high, the goal is to get kids off of immunosuppressants much faster so they start the process at Day +42 (Thursday for J). That takes the governor off the new immune system and lets it do its job, which hopefully includes killing any leukemia cells that might be hanging around trying to make a comeback. This drug helps with the delicate balance of transplant, so weaning off is done with much scrutiny and is a big reason why the leash is so short with the transplant team. You can pray that the wean is smooth and we don’t see any signs of acute GVHD develop as the brakes are taken off his new cells.
We had a solid end to the week, despite what Charlotte’s face 👆 says. That’s the mostly fake, intentionally manipulative “mommy’s leaving” routine. Poor Emily. That’s J in the top right, playing electric “kitar” with Child Life.
I mentioned his eating trending in the right direction. With that, his spirits have improved as well. We are seeing his old personality come out on a regular basis, the good and the less good. He’s never been super into hard work, or really any work at all. I had finished my lunch last Thursday and had the bowl still sitting beside me. He came up and made a comment about my dirty dish. He left and came back several minutes later, making another comment. I told him I thought he was going to get it for me. “Dad! A diwty dish? Diwt? Germs? Do you want the cancer to come back?!”
Later that same night, L talked him into getting a cheeseburger from McDonald’s in addition to the usual big fry. It was one of those hodgepodge dinner nights where we all eat in front of the TV. Yes, this is a very rare occurrence for us too. Anyway, he went to start on his burger, which we were thrilled about. Then a couple minutes later, absorbed in the show, he asked, “Where’d my cheesebooger go?” Yes, in his absent mindedness, he managed to lose a cheeseburger on the couch among the pillows and blankets.
We’ve been mixing it up lately with some different activities. Last week, we broke out the little drones that my parents sent. We hadn’t used them since pre-transplant and only did a few times then. There is a grassy square just out front of the house and it seemed like a great place to try. The twins are perfect fetchers of the drones. None of us has managed to figure out how to control where the thing goes, so it always ends up crashed half a block away. It’s glorious; the twins play retriever and have fun without realizing their usefulness to the rest of us. It is less glorious when they try to fly it. A neighbor doing some renovations has a big construction dumpster on the street adjacent to the square. I told Henry not to fly it into the dumpster. Guess where he flew it not two seconds later? I tried to talk the twins into letting me hold their ankles while they grabbed it out, but they were on to me.
Jennings also got a science experiment set and that was a big hit last Friday. Henry couldn’t wait to try it out. Over and over Friday morning, “We do da cocaine-o now?” A little too appropriate of a mistake, considering that particular (volcano) experiment involves the use of a white powder.
For family night on Friday, we did the usual nachos and the movie selection was Home Alone 2. That’s us mid-movie up there in the top left. The warzone of chip crumbs, half melted ice cream cones turned upside down on the nacho plate, and injuries sustained from sugar-induced jumping & laughing was intense. Henry had asked Lauren earlier after I had blended up some margaritas, “Why you have bargaweeta mommy?” Surveying the damage at the end of the night…this is why, son. This is why.
In other news, Saturday was our anniversary…11 years. We’ve now spent three anniversaries in Memphis, so we’re getting good at them. L surprised me with a day date made possible by two babysitters. We walked the Big River Crossing bridge over the Mississippi, met friends at a brewery for lunch, then did a touristy walk down Beale St. and got the cliche picture to prove it. We had a night date too, facilitated by Miss Cathleen who hadn’t seen the kids in way too long. We met the same friends for drinks before dinner, turns out their anniversary is three days before ours and they were out celebrating Saturday as well. We had a great dinner and made it almost halfway through the appetizer before we teared up, haha. We got home and Cathleen said Jennings was a champ with his medicines. When she told him it was time to take them, he told her that she could just call them “meds.” “And the ones I swawwow, you can call doze pills.”
This week should be fairly routine, but you can definitely pray for the wean off of Sirolimus that I mentioned earlier. You can also continue to pray for wisdom around maintenance therapy, whatever that may look like. We may be having a longer conversation about the trial this week, along with one other option for maintenance that the team is considering. The trial is still looking like a possibility, but we hope to know more soon.
“You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.” Ps 16:11
#allinforjennings
PS- I neglected to mention this last post…to all of you who sent cards and gifts for his birthday, THANK YOU! ❤️ You sure made this boy feel special.