Plenty to Celebrate
Tomorrow is a big day. J turns six! Just six months ago, it was a foregone conclusion that we would get here. Then the news we got right before Thanksgiving changed all that. Made it a lot murkier. The fact that we have arrived at this point makes the celebrating that much sweeter. Not to mention that this week has been filled with other reasons adding to the sweetness.
It’s hard to say which of the happenings of the week is the best. That’s a problem I’ll take. We found out late yesterday that he is indeed still MRD negative and there is no evidence of leukemia in his bone marrow. The news was a bit delayed and we had begun to wonder. Our minds can so easily wander to dark assumptions and false conclusions. But in the end we got the news we expected, which is a relief and a small step forward. We should find out next week whether the genetic translocation associated with his MLL subtype is present in any cells. This is what was still seen in his marrow right before transplant and would be an ominous sign if detected.
In other news, the NG tube is out! Jennings woke up hungry on Wednesday morning, which is the first time he’s felt that sensation in weeks. Since he had the BMA procedure Wednesday, I had to turn his feeds off at 2a in preparation for the anesthesia. It was wonderful to find out that he could still get the desire for food, but tragic because he could not eat due to the upcoming procedure. In another huge answer to prayer, he woke up from anesthesia in a good mood and still hungry. In between morning labs & consults and the sedation, we toured the cafeteria, where J picked out two “cans” of Froot Loops and one “can” of Apple Jacks. He housed the Apple Jacks, with milk, while I wheeled him around campus to another couple appointments.
In those earlier appointments on Wednesday, we found out that his NG tube was up for replacement on Friday. The same tube can only stay in for 30 days from a cleanliness, infection prevention standpoint. With that bit of information, getting the tube out became a priority for the week. I talked to him about it and he seemed on board for giving it a go, which meant trying to eat and switching back to making medicines orally, rather than through the tube.
So, Wednesday night we made the switch with the meds and he knocked them out no problem. We also decided to leave his feeds off the rest of the day Wednesday since he did well with the cereal and the hunger feeling seemed to help. That night, he asked to have you-know-what for dinner. He managed to eat two chicken nuggets and about half of the fries, saving room for half a donut for dessert. He gets very specific right now with his food requests and has had a couple run ins with cold fries. When we agreed to his CFA request, he said, “Put some wum (warm) on them…and lots of salt.”
He continued to tolerate both food and meds well on Thursday, so we left his feeds off again. By that afternoon, it was clear he was ready to handle life without the tube. The plan had been to take it out in clinic on Friday, but he held us to our promise to take it out as soon as he showed he was ready. So when everyone made it home from school on Thursday, we yanked that sucker out and chunked it in the trash.
The last bright spot is explained best with a picture 👇
This was Tuesday night during dinner. A spontaneous display of sibling affection. So real that they both agreed to do it again so I could get the picture.
He is doing great and we continue to rejoice in days like these.
Top left: Watching America’s Funniest Home Videos, circa 1994. Top right: No tube, no problem! Bottom: Storytime, 2 out of 4 sitting still is as good as it gets.
We don’t have an update on the clinical trial front, though Aimee is supposed to be having more conversations this week. These updates are more fun to write and are easier to read, I’m sure. It’s easy to think he is out of the woods. Unfortunately not. He’s got a long way to go just to get back to himself, let alone to declare victory.
Like the growing child analogy flipped on its head. This is what cancer and transplant does to you. And even as he rebounds, the reality is that he still faces a monster.
I love the image below so much. It captures the enormity of what these kids face, but also the courage and resiliency they display. Kudus to @idrawchildhoodcancer on Instagram for saying it so well through art.
AML is a special kind of beast. He’s not roaring over the mount right now; he’s currently knocked down on the mat and we’re counting. We’ve been here before and counted him down for two and a half years. That’s so long we forgot we were counting. He got up quick and caught us incredibly off guard. And now, as a result, a transplant doesn’t feel like enough. But it’s currently the only potentially curative option; hence our fervent prayers for the trial.
In a hopeful encounter this week, we ran into a dad and his son who we met last go round. His little boy is about the same age as Jennings, same diagnosis. We were neighbors on the BMT unit and pretty much neighbors in real life, they being from Indian Trail (talk about small world). When Jennings was admitted for transplant #1, this little boy had already been inpatient for 87 days. He had life-threatening complication after life-threatening complication. We ran into them one time in Charlotte at a Christmas party for the St. Jude affiliate clinic, but had since lost touch. I’ve thought about them several times since J relapsed. They were on campus the other day not for treatment, but for his three year post-transplant check-up. Sometimes the monster is no match for the boy.
I’m following a chronological Bible reading plan this year and happened to read David vs Goliath this morning.
“And David said, ‘The Lord who delivered me from the paw of the lion and from the paw of the bear will deliver me from the hand of this Philistine.’ And Saul said, ‘Go, and the Lord be with you.’” 1 Sam 17:37
God is able. We pray, Lord, let it be so.
#allinforjennings