Lift Up Your Hearts!

I know many have been waiting on tenterhooks for the results of Grace's recent testing, as have we. Sometimes good things come to he who waits.

The bottom line: The news is a bit confusing, but it's wonderful! Grace remains fully engrafted and has no evidence of JMML!

[Insert Doxology here.]

Here's the story, as Jon wrote it (except for a section in brackets that I added for what I hope is clarity, as there seems to have been a typo or cut-and-paste error). 

We are very happy and it has been a weight off of us. Until a couple days ago, it was seeming like it was quite likely going to be a bad answer, as we've been praying and thinking over this last week, I had eliminated a couple possible theories. The clerical copy and paste error wasn't correct, because there were some small changes from the previous test. The false positive result is quite unlikely.

Two new theories emerged this week, that Faith's marrow is successfully working in Grace, but had become "infected" (probably not the right word for gene mutations) by Grace's JAK3 mutation, and the second is that Faith actually has the JAK3 mutation herself. It turns out that the latter is most likely the right answer. We've been talking and emailing the doctors over the last couple days and it turns out that the JAK3 was originally reported as pathogenic since it was in the presence of leukemia, but they are now thinking that it is a "regular" mutation and not going to be a problem. Faith's bone marrow wasn't tested, but JAK3 (and others) can be detected in the blood, but, basically, since she is old enough that if it was going to cause a problem, [it would have shown itself already, they] then weren't concerned about it, and so the pathologist who saw Faith's results considered it a normal variant and it was "filtered out" of the prior reports. They are going to go back and modify some of the reports to make it more clear for future readers.

It is also likely that since both Faith and Grace have it, that either Heather or I have it as well. There is an immunologist at Boston who agrees with our oncologist that it is "overkill" but is willing to do some blood tests to do further checking. There are very few documented cases of this particular variant in gnomAD (good luck trying to figure out that site; even when I type in the specific protein alteration/variants, I still can't figure out how to find any useful data), but there is a similar variant that causes some immune system problems, so in the interest of reducing anxiety, the doctors thought it could be worth a meeting and a blood draw, but they don't expect anything interesting to come out of that. We aren't currently due for a visit to Boston, but the doctor suggested we schedule one for Grace and Faith and meet with immunology on that day, so we'll probably do that once summer vacations and trips are over.

We can't quite tell if the chimerism test result came back, as Heather and I interpreted an email differently, but other related tests don't show any presence of JMML, so everyone thinks everything is still going well. And I forget if I wrote this before - Grace's blood tests are the closest to within normal limits than any test I can remember. She just has a few tests (out of ~30) reporting just barely outside what would be normal for the general population, and her "normal" isn't normal, at least not yet, so nothing interesting to report there either.

Her loaner hearing aid is doing well, and we are going to purchase one at her next appointment. (probably the main reason to do that is if we lose or break the rental one, we have to buy a new one, and the owned one has insurance). She went swimming yesterday and it wasn't until after I dunked her under that I thought to remove the hearing aid, but fortunately, Heather and Joy are more on top of it than I, so it was already taken out...

She continues to impress everyone taking her daily medicines, she now takes them without water, but just swallows the pills, though does still insist/enjoy the post-med tic tac.

She'll be going to Dartmouth on July 9th for a pretty extensive workup: audiology, opthamology, MRI, CAT scan, and the regular blood draws.

Our deepest gratitude to all of you who participated in the day of fasting and prayer, are praying regularly for Grace, and/or are supporting her family in so many other ways.

As I near the end of Wind and Truth, Brandon Sanderson's 1344-page final book in the first half of his epic Stormlight Archive fantasy series, I am reminded of the following quotation from J. R. R. Tolkien. It is part of The Homecoming of Beorhtnoth Beorhthelm's Son, a play based on a fragment of a poem about a historical battle between the English and Viking invaders.

This is not pessimism, but a call for strength and courage during dark times, which come to all.

Heart shall be bolder, harder be purpose,
More proud the spirit as our power lessens!
Mind shall not falter nor mood waver,
Though doom shall come and dark conquer.

When I was young, stories for children about sports had one theme in common: sportsmanship. In fact, that was the main reason given for the existence and importance of sports: taming the instincts of aggression and domination into tools for the betterment of all areas of society, including the protection of women and children. A coach's job was to build a winning team, sure, but his most important job was to build boys into men. With minor modifications, that works as well for girls and women.

Today we have a win-at-any-cost mentality that poisons sports, politics, and every other area of life. Martin Luther King, Jr.'s dream that people would be judged by the content of their character loses its soul when character no longer matters.

I don't understand how people can live with themselves whose victory comes from not playing by the same rules as their opponents.

Mike Wimmer is 16 years old, loves cars and video games, recently earned his PhD, started doing contract work for the United States Special Operations Command at age 10, and has a viable technology, with a working prototype, that could help save our endangered coral reefs.

“I always had an innovative mindset and the idea to want to solve challenges with new technologies,” he said, adding that he pushed himself “to go even farther, even faster, even better.” He wants his work to “have a positive impact on the world.”

I'd love to see him collaborate with Elon Musk. Although, given Wimmer's own predilection for entrepreneurship, he probably has it in him to become Musk's nearest competitor.

Wimmer’s latest underwater gambit is one in a series of robotics and AI startups under his belt. He’s been building companies since age 10, including Next Era Innovations.

Here's the Epoch Times article on Mike Wimmer; there's more available online, but if you search for him don't get confused by the artist of the same name.

Here in Central Florida there is so much light around us that we never see the stars as I remember them, often just a handful of the brightest ones.

I was perusing Michael Yon's substack when I came upon this picture, taken when he was in Afghanistan. This "ordinary" night sky there tells us what we should be able to see with the naked eye, which is far more still than the view was from my suburban, upstate New York neighborhood.

Does growing up blind to this majesty impoverish our philosophy, our imagination, and our vision of life?

When I saw Yon's photo, I immediately thought of Isaac Asimov's short story, Nightfall, which you can read (or listen to) here. It begins with this quotation from Ralph Waldo Emerson:

If the stars should appear one night in a thousand years, how would men believe and adore, and preserve for many generations the remembrance of the city of God?

Nightfall is set on a planet where six suns light the sky, and there is never darkness, except for once in every two thousand years, when but one sun is visible and suffers an eclipse for over half a day.

If you take the time to read this, I predict that you, like me, will still remember it a lifetime later.

Grace's church has organized a day of fasting and prayer for Grace.  For anyone interested in being a part of it, here is the information from the Daleys' website:

It's wonderful to spend time with Grace in person and see what a bright, capable, and happy three-year-old she is! And apparently healthy, though the knowledge that appearances can be deceiving is always in the background. Her new medication appears to be proceeding with only minor side effects, though it's still too early to see any noticeable good effects. She takes her pills like a champ: not only has she learned to swallow them, but she does so without any help, not even a drink. (The single Tic Tac given afterwards is still an important part of the routine, however!) She is adjusting well to her cute multi-colored hearing aid.

However, the background concerns are poking into the foreground, after Jon (Jon, not the doctors!) noticed something strange in her last bone marrow aspirate results. The communication between Boston and Dartmouth is STILL horrendous. (Boston is where the bone marrow transplant was done, and where all those records are, despite them officially having handed her care off to Dartmouth.) As a friend who has had plenty of her own experience with childhood medical issues, wrote, "You want to trust that [the doctors are] doing everything, but the reality is that no one will pay attention to the details and care for her health as much as you."

The upshot is that the results showed evidence of something called the JAK3 mutation, which apparently is related to but not the same as the mutation that causes her NF1. Maybe; I'm not clear about that. But it's in the bone marrow and was supposed to have disappeared in the transplant along with everything else about her original marrow. So the urgent question is: Is this an error (they happen) or a sign that her old bone marrow is still lurking in her system? This coming Thursday the doctors will take another aspirate (with all that comes with it, including general anesthesia) to check the results. As Heather said, Please pray that Grace has no trace of her old marrow and for peace.

Below are more details taken from the Daleys' post.

Jon was reading through Grace's test results and saw that the most recent bone marrow report mentioned the JAK3 mutation. He contacted her doctors because we thought that one was gone following the transplant.

Dartmouth doctors can't see her Boston results to compare [insert eye-roll emoji here] so they contacted the head transplant doctor there. She said that seemed odd given the good chimerism results, but she wants another aspirate as soon as possible to make sure. So that is scheduled for June 12. We aren't clear as to why no one noticed that before. We think the Dartmouth doctors thought it was expected, and I guess the Boston doctors didn't see the results? It does make us wonder if we need to be paying more attention - we try to read all of the medical records, but don't always read through everything, and sometimes it gets pretty technical.

Please pray that Grace has no trace of her old marrow and for peace. We know a boy who had a relapse and had to go through the whole transplant process a second time and we really don't want to follow in his footsteps.

I'm letting the Cares Chorus be an earworm in my head.

Thank you, as always, for your love, your concern, and your prayers.

I hear that the CDC is recommending that anyone travelling abroad get vaccinated for measles.  No matter where they're going.

"Never had it, never will." (Are you old enough to remember that 7-Up commercial?)

If my doctor recommended testing as part of my annual blood draw, and Medicare would pay for it, I might consider checking to see if my antibody response is still robust after all this time. After all, it has been a few years since I had the measles.

As it turns out, the CDC is okay with that.  If you dig down just a little from the scary news stories and read what the CDC actually says, they acknowledge that if you've had measles in the past, you're good to go.

This is my dream garden. It's not an achievable dream at this point in my life, and even if I were much younger, there's a lot more to creating a system like this than he discusses. It's not so much a garden as a very small farm (albeit this one is in suburban Long Island), and requires farm-level work. For one thing, you can't decide to go out of town without arranging for someone to care for your plants and animals. It's like being a pet owner, only a lot more intense—you can't pack up your chickens and take them to a kennel, and neighbors who will happily feed your cat might draw the line at milking goats.

If this is ever going to be your dream, it's probably easiest to start dreaming early in life, when you're making decisions about family, employment, and home location.

Nonetheless, there's a lot of inspiration to be gained from Mike G.'s experience, especially in seeing how much he accomplished in under five years of consistently pursuring his goal, taking one step at a time, and learning along the way.

If your day is in need of a laugh, or at least an ironic smile, try some Great Moments in Unintended Consequences. It's lighthearted humor with a serious point. Here are two examples, from which you can get to many more. Warning: they're addictive.

Streisand Effect, Sesame Labeling, Golden Goals

Printed Guns, Scratch and Sniff, Jakarta Traffic

It was a genealogy moment. I was thinking about Memorial Day, and that it would be good to write a post honoring my own ancestors. I couldn't think of anyone! Oh, there were plenty of ancestors who fought in wars, from before our country was founded through World War II, including both sides of the Civil War, but none who died in their service, which is what Memorial Day is all about.

"How odd," I thought. "Was our family just extraordinarily lucky?"

And then I laughed at myself. It's not odd at all. Who is it, mostly, who dies in wars? Young men! Men who go off to war early in life and don't come back, never to have the opportunity to become ancestors.

If we were to honor our ancestors who suffered the loss of a child in service to their country, that would be a very different story.

Here's the follow-up to yesterday's post which featured the hot-button controversy over an image with an embedded swastika. If you watched the video, did you look closely at the contested picture?

BOLO—Be On the Look-Out for AI-generated images, video, and other content. It can be a fun puzzle; it's good practice training your brain to be more observant; and the skill may help protect you from propaganda.

Here's the image with the clandestine swastika, which was part of a comment posted on Matt Walsh's X feed, critical of his contention that many native-born South Africans are white. Now that I know about it, I can't unsee the symbol, and I did say I wasn't going to poke the bear unnecessarily, so I've blurred it out. You can see the original if you click on the picture.

This image freaks me out, and that has nothing to do with swastikas. It's creepy in the same way some of Salvador Dali's paintings are creepy.

Ignore the swastika; look at the girls. Six young girls, all dressed in white, so alike they could be sisters—or sextuplets. Look at their arms, their legs, the physically impossible contortion of their bodies, the arrangement of their dresses in ways no one would sit for an actual photograph (e.g. revealing their undergarments). Definitely creepy, and clearly AI-generated. As if someone had typed into an AI engine, "Create an image of six blonde white girls in which their dresses take the form of a swastika."

This is not a photo from reality. It is an image designed to cause trouble.

Surely someone else noticed this; I'm not going to waste my time wading through what others said. What interests me is that Matt Walsh's video does not indicate that he noticed it or thought it worth mentioning.

I find the use of Artificial Intelligence (Automated Idiocy) in this way disturbing. At root, AI is a tool, like a knife. It matters whether the knife is in the hands of a chef, a surgeon, or a psychopath.

I don't follow Matt Walsh's podcasts, but that's for lack of time, not lack of respect. I find him intelligent and well-spoken, and sometimes quote him here. Not that I always agree with him—he nearly lost me when I found out that he thinks raw milk is disgusting. I was almost one of the 14,000+ people who called him out on that, but decided instead that each of us has a right to be wrong, and let him alone.   

Why have I included him in my Heroes category? Because we need heroes at every level. Maybe Matt Walsh didn't run into a burning building to save a child, but he just took an important stand against the undefined but powerful mob that will use any excuse and any tactic to bring down those who dare disagree with whatever narrative they are currently imposing. I have no problem with calling someone out for saying or doing something that troubles me, but the demand for an apology and public groveling, which is almost always a part of the process, is not only wrong, but a dangerous abuse of power.

I consider it a heroic act to stand up to that kind of pressure. It's not easy. I remember, with shame, the times in my life when I've apologized for things I still believe were not only not wrong, but actively the right thing to do. And yet, shameful though I think my groveling was, I'm not apologizing for apologizing under duress, because the threats were not to me but to my children. The memory, however, makes me all the more inclined to respect people who, as Walsh put it, decline to take part.

In this video, Walsh addresses the firestorm that erupted when he refused to take down an image that someone else posted in a critical response to one of his X posts. Walsh, the mob insists, knowingly and approvingly posted a swastika, because he didn't censor his critic's image.

Now that I know where it is, I find it impossible not to see the swastika in question. But until it was pointed out, I didn't see it at all. I have no problem believing that Walsh didn't either. But once noted, why not take it down? The better question is, why should it be taken down? Even if it had been in plain sight, a normal swastika, while it would have been fine for Walsh to delete an image that someone else had imposed on his X feed, it is wrong for anyone to pressure him to do so. The swastika has been around for millennia and originally meant well-being. This mob would have had us burn our antique Oriental rug because it included these ancient symbols in its design.

Just because someone has reused a historic symbol for other purposes, that doesn't mean it's right to cave in to the misappropriation. Even if I'm the last person in the world to do so, I will still use "gay" to mean "lighthearted," use masculine pronouns as neutral when appropriate, and continue to cringe every time I hear "they" and "them" used as if they were singular. (This means I am cringing frequently while listening to the lastest New International Version of the Bible—not a salubrious situation.) I also insist on singing the old words to familiar hymns rather than the abominations featured in modern hymnals. Take that, "Good Christian Friends, Rejoice!"

This attack on Walsh makes me want to post an image of a swastika loud and clear on my blog, maybe in the company of my nasty-looking image of the COVID-19 virus. However, even if it may sometimes be necessary to fight a bear, it's stupid to poke one unnecessarily, so my more rational side beat down my gut reaction in this case.

The really interesting part of all this is the image itself—which I reserve for a subsequent post. I'll try enabling comments, just in case someone else notices the issue with the picture before I write about it. Please be respectful and refrain from using the comment section for arguments.

What you do matters. Answer the note. Respond to the email. Return the call.

I have no idea why these words from my friend Eric Schultz showed up recently in my feed reader, as their context is from 2020—but they're as important today as they were then. They're from his Occasional CEO article, "Answer the Note: Lessons from Ben & Jerry's and Warren Buffett," in which he demonstrates the power of simple acts to change lives. I would be remiss in not adding that Eric lives his own advice.

The simplest act of kindness can be transformational. And, if you are especially lucky, you will never even know the good you have done.

I hope you don't have to be on Facebook to see this very short clip of the challenge Jordan Peterson gave to ChatGPT.

I said, "Write me an essay that's a 13th rule for Beyond Order [one of Peterson's books], written in a style that combines the King James Bible with the Tao Te Ching." That's pretty difficult to pull off.... It wrote it in about three seconds, it's four pages long, and it isn't obvious to me ... that I would be able to tell that I didn't write it.

As the man said, "Hang onto your hats."