Much Work to be Done
Not so much with Jennings, thank the Lord, though there is some. More so in the realm of pediatric cancer and specifically AML, but more on that later.
Wednesday was a day full of appointments, but it was the only day of them for this week. Today, Friday, is Day +43. Six weeks and one day post-transplant and he is already down to one appointment day a week. It is astounding that he is where he is already. After his first transplant, it was into the +80s before he was down to only one appointment day a week. He had issues with vomiting, diarrhea, and blood chemistries brought on by mild dehydration. He has none of that now. Yet the possibility of GVHD and other complications is still high, hence why we remain tethered to Memphis and under at least weekly watch by his transplant team.
His labs looked great on Wednesday and his weight was the same as last Friday. Slightly disappointing that he’s not gaining yet, but still solid to be holding what he’s got. He had a follow up echocardiogram to keep a check on his heart after all of the potentially heart-toxic chemotherapy. His NP moved some things around to get his echo moved up in the day and then we got his dressing changed right after. Better to risk getting ultrasound jelly all over an old sticker versus back-to-back sticker changes.
With all of the help expediting from his team, we made it out by early afternoon and in time to meet sissy & mommy at the Children’s Museum of Memphis. It was my first time back this trip and, like with all things here, quite nostalgic. We took Caroline there quite a few times and Jennings once or twice last time around. Three years later the place is still a hit. The highlights included the kid-sized grocery store complete with shopping carts and real cash registers (minus the cash) and a real cockpit of a Boeing Fedex plane. Jennings finished his shopping and I, surveying his cart stacked high with boxes of Sugar-Os and cheese wheels, asked him where all the vegetables were. “I got some wettuce,” he replied.
While they sat in the cockpit of the 737, Captain Jennings exclaiming that the plane was bwoken down and that the “fixing plane” was on the way, Lauren & I hung out in the mock control tower. Caroline, co-pilot slash flight attendant, told us every five seconds, “Take your seats please!” Her tone and delivery revealing that the “please” was thrown in as a formality.
Aimee, his transplant doctor, called to talk while we were at the museum. I did my best to conceal our location without having to lie. She would not be at all pleased to find out that one of her patients, only 42 days removed from transplant, was spending the afternoon in a children’s museum. I succeeded and we agreed to setup a call for the following day where Lauren could be on as well.
The call was mostly an update on the post-transplant maintenance discussions we’ve been having. There are still options on the table and for that we are extremely grateful. Given where we are, it doesn’t feel adequate to sit and wait, but the reality is that there is just not much else out there to do. What is out there is being considered and for that we rejoice. Oh, and we got the email right after the call that his chimerism is still 100% this week!
We celebrated by doing all the school pick-ups together as a family and heading straight to Jerry’s for snow cones. If you ever get around to booking that getaway to the Bass Pro hotel, do yourself a favor and make the 20 minute drive out to northeast Memphis to Jerry’s. They only take cash and there is no “inside.” That’s how you know it’s good…and this visual evidence 👇
The conversation with Aimee and where we are with Jennings, where so many others are, both point to how much work is needed in pediatric AML. Jennings is in his second complete remission from this disease, he’s had a (thus far) successful second transplant, but even with all that the odds are not in his favor that the disease stays away. Yet this is the “best” and most aggressive treatment available to him and all other kids with relapsed AML.
Work is needed on two fronts: the reactive and the proactive. Most of the research has historically taken place on the reactive side. You or your child is diagnosed with AML. How do we get it gone? That has been the focus. And that front still needs much work - it is not uncommon in this disease to not be able to reach MRD negative remission status. For those cases, reactive research must continue.
Reactive research also continues in the vein of finding less toxic treatments. Right now, the strategies that are employed to achieve those MRD negative cases, like Jennings, involve incredibly toxic chemotherapies. Chemotherapies that result in lifelong and late stage, sometimes severe, health issues. Sometimes, they result in secondary cancers (which we will never know for sure, but is suspected in Jennings’s relapse). What if we could still get you MRD negative, but without that toxicity? The answer is we can; we just haven’t figured it all they way out yet.
But, the most lacking arena for research in this disease, in my humble opinion, is the proactive one. You had AML. Now you don’t. How do we keep it that way? The current answer is “we transplant you and then hope.” Yet even in transplanted patients, the risk of relapse is more likely than it is not. And in patients that have already relapsed and gotten back to this point, it is staggeringly more likely. What if we could find a nontoxic inhibitor, or antibody, or immunotherapy that we could give you to keep the cancer away? The answer, again, is we can; we just haven’t figured it out yet.
The figuring it out part involves research. Research involves funding. Once it’s figured out, treatments need to get to the kids that need them. That involves collaboration, risk sharing on the side of patients and families, and a determination to stop letting this disease kick us in the teeth. In our ever-sophisticated world, solving the research problem has become much easier, dare we say attainable. However, the second part has become increasingly more complicated, almost debilitating. Almost.
I write all this to encourage you to get involved. Help advocate for kids. Whether that’s giving, fundraising, or just being knowledgeable about what they face, it all helps. Our, or I should specifically say, Lauren’s, money is where our mouth is. This feature came out a couple weeks ago, my wife’s face is the first one you’ll see:
What this disease does to families, to kids physically, to kids mentally 👇, needs to change.
Just the other night, Jennings at bedtime, said, “Dad. Three reasons why I don’t want to die.” Gulp. I braced myself for what might come out next. It turned out to be three ways he didn’t want to die. “Number 1, I don’t want to get shot (we’ve been watching Selena and sissy is doing a biography on her). Number 2, getting my bones taken off. Number 3, (he makes a motion like someone snatched his head off).” Instead, he said he just “wanted his bwud to go out” and did his best impression of dying peacefully. “Then I’ll go up to heaven…….and watch the iPad all day.”
“And they came, bringing to him a paralytic carried by four men. And when they could not get near him because of the crowd, they removed the roof above him, and when they had made an opening, they let down the bed on which the paralytic lay. And when Jesus saw their faith, he said to the paralytic, ‘Son, your sins are forgiven.’” Mark 2:3-5
Faith in action.
Clockwise from top left: Jennings with his self-made diploma, graduating from OT. CMOM carousel. Jennings’s homeschool face, or how he would respond if he was told there was much work to be done. Nightly multitasking.
#allinforjennings