And Celebrate We Did
Jennings is officially 6 (but talks to us like he’s 46) and we celebrated him big on Saturday. Lauren planned a small party for him at Bricks & Minifigs, a LEGO-themed store in Collierville, just outside of Memphis. We never would have considered anything like that after his first transplant, but, as previously shared, we are looking at the risk-reward equation a little differently this time. It paid off and made his birthday feel a bit more normal, and he had a blast. The kids did several building challenges, including making their own race cars that they then raced down a pinewood derby style track. It seemed like everyone got a turn “winning” which was huge, although Charlotte & Henry couldn’t quite grasp the concept of catching your car at the end. They preferred, instead, to gather up the pieces and parts of their cars after they flew off the end of the track, smashing to bits.
Clockwise from top left: the birthday boy ready to build. Cake…mostly for show - he asked if he could be done after one bite. J’s car with a narrow win. The LEGO Master and the Assistant to the LEGO Master.
We came back home to continue the festivities as a family. Jennings elected to have some “alone time” with mommy while they went to pick up his birthday Chick-fil-A for dinner. I took the other three to the park and then we all reconvened for an early dinner with a side of AFV, leaving just enough time for more cake and presents. That devolved pretty quickly into chaos. Loading the other three with sugar dumped fuel on the fire of their desire to “help” with the presents. No matter how many times you reposition them, spreading them out in a nice circle where everyone can see, they end up on top of one another, oblivious to their brother’s personal space.
After the dust settled, we chunked the twins in bed and let the bigs stay up to try out Jennings’s main present. A Nintendo Switch. The video games are here to stay, which is fine, especially for him considering his limitations for the near future. I am not a “gamer” myself and other than some recent Xbox in the hospital haven’t touched one since college. You could say I was under a bit of pressure to get the thing unboxed, hooked up, and working in 2-player mode. The shouts of “C’mon, Dad!” got less encouraging and more demanding. Once working, my job was not complete however. I was mistaken for an expert in the gameplay of LEGO Movie 2 and was repeatedly asked, “Now what?” “What do we do next? How do I make it do that thing again?” With a lot of deep breathing and an adult beverage, we managed to avoid any controller throwing or quitting, and played until after 9p.
We spent the rest of the weekend enjoying some gorgeous spring weather here in Harbor Town. We took a couple family walks down to Cordelia’s. That’s smally in the top left picture 👇 looking more like a piece of bread to those ducks than a 3-year-old (she is usually full of carbs, so they’re not far off). On these walks, Henry all out sprints from intersection to intersection on the sidewalk. Charlotte sings to herself, “Lemon and a drop of huunnnney” over and over and over. She even started dancing to it in the checkout line, which got her plenty of attention but no discounts.
Sunday evening we grilled out for the first time since I don’t know when. Lauren and I dashed around from the kitchen, to the grill, to kids playing outside, to kids playing inside. I managed to do most of that while carrying an iPad streaming the final round of the Masters.
His appointments this week have been routine. He got the “all clear” from physical therapy and his next follow up with them won’t be for another 4-6 weeks. We found out today, Wednesday, that there was no evidence of any genetic mutations (either for monosomy 7 or MLL) in his bone marrow from last week. That is excellent news.
The biggest and only real concern on Monday was his weight. He dropped a pound over the weekend from Friday to Monday. That’s not great and with the tube out, the team is watching it very closely. On Monday, they mentioned “reassessing” today if it continued to drop…which is code for putting the tube back in. Over our dead bodies. As long as he’s eating something, there’s no way he’s getting another one. Fortunately, at his today’s weigh-in he had gained the pound back. He has been eating slightly more, but we were probably more aided by a secret weapon…he hasn’t pooped since Monday 😂.
The eating and getting the weight back is a long game. We know that from last time, but it is still hard to be patient. We have been encouraged with his desire to eat and his willingness to try. It does catch you from time to time though, just how skinny and bony he is. He’s wanted to wrestle me a few times over the past few days and it’s almost scary how fragile he feels. But, as long as he continues to tolerate at least some food and has an appetite, he’ll eventually gain it all back and with it, his strength.
He is Day +34 today. Last time, we would have been noting that as 1/3 of the way home. For whatever reason, all of that feels different this time around. Some of it is the pending possibility of the trial (talks continue in a positive direction on that front). Most of it is the relapse itself. Last time, Day +100 felt like a big milestone. And then, with each passing bi-weekly then monthly check-up, we had bigger and bigger sighs of relief. Not that we were technically still counting, but he relapsed at Day +951. That’s a long, long time from Day +34 and I think it’s why thoughts around re-entering any sense of normal life (going home, returning to previous routines, etc.) are hard right now.
We’ve got some time to work through all of that. And it’s much easier to work through when he is doing great today. He has taught us so much and probably one of the best lessons is to live today. Be thankful for today, hope for tomorrow, and trust God.
“When I am afraid, I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid.” Ps 56:3-4
#allinforjennings
Oh, and PS- we got a date night in last night. First one in two months. Thankful for the opportunity and for the beautiful spot we can enjoy within walking distance.
