Lift Up Your Hearts!

If you're a very regular reader here, you may have noticed that the blog has been unavailable for a couple of days.  It is up again now, so if you come here more rarely you might not have noticed, but major changes have been made "under the hood."

A big Internet hacking threat has emerged, necessitating a major security update, one that completely broke the blog software we have been using for more than 20 years.  I guess it was due for an upgrade anyway, and am looking forward to what might be new and improved.

In the meantime, Lime Daley, our intrepid webhost, blog software manager, and general fix-what's-broken provider, is steadily correcting whatever is "new and not improved" or "old and broken." 

So things will look a little different here for a while, but we hope it will be acceptable and eventually even better.  Thanks for your patience!

Facebook's record for showing me items of value is dismal—but there are still enough gems to keep me on the platform.  Whatever is neither a good idea nor genuinely funny I prefer to ignore, because to write about bad things gives them publicity.  I've never forgotten one newspaper columnist who wrote, "I don't care if you love me or hate me, as long as you read my columns."

However, some ideas are so bad they require warnings, and a post I saw in my feed the other day needs to be called out.

It was a list, written as if from a mental health professional, of things people say that may sound helpful but are actually put-downs.  "When they say X, they're actually being disrespectful and insulting; you should answer their intentions rather than their words by responding Y."

If this were a one-off it might best be ignored, but I see a growing trend.

• 10 Signals that Your Partner Is Trying to Control You
• 15 Childrearing Practices that Are Actually Abuse (followed by a list of strategies whose primary fault appears to be that they do not conform to the writer's personal view of ideal parenthood)
• 6 Body Language Signs that Tell You When Someone Is Lying

And similar exhortations to worst-first thinking:  assuming that what a person says is not what he means, attributing to him the desire to do you harm, and never giving him the benefit of the doubt.

What's interpreted as malevolence may simply reflect cultural differences, stress, or perhaps physical problems.  (Memo to the body language expert who insists that frequent blinking is a sign that a person is lying:  It's much more likely that he is suffering from dry eyes, or has been staring at a screen too long, or finds the sunlight too bright.)

Unreasonable suspicion may at times be a survival tool, but it's the mark of an unhealthy society.  You cannot live well if you're always looking for hidden meanings, assuming the worst, and checking for monsters under your bed.  I know people who choose their seats in a restaurant based on these fears, but can you truly enjoy a meal if you're constantly scanning for villains who might burst through the door at any time, guns blazing?

Naïveté makes a person vulnerable, and willful ignorance invites trouble, but suspicion throws sulfuric acid on relationships.

Noah took me for a spin in a Cessna Skylane recently.

This is not our plane.

This is an F-22 Raptor, here from Langley Air Force Base in Virginia for a local air show. We taxied past it on our way to the runway. Fun fact: That plane is from the same unit that shot down the Chinese balloon a few years ago. Was it the same plane? We'll never know, but it's fun to imagine. According to Wikipedia, "On February 4, 2023, an F-22 Raptor took off from the base and shot down a Chinese balloon, marking the jet's first-ever combat air kill."

Our Skylane flight was not without its own excitement. Noah was performing maneuvers and at one point he cut the power and practiced landing as if the engine had failed. It was perfectly safe—he didn't turn the engine off, just put it into idle—but it was still thrilling to think that we were making the approach and landing without power.

Having never personally gotten over the Uniform Monday Holiday atrocity that changed our holiday calendar back in 1971, I am very pleased that this year I can wish you all a very

Happy Columbus Day!

on the "correct" day of October 12^th.

I still haven't gotten over the transition from the Julian calendar to the Gregorian, nor the use of CE and BCE instead of AD and BC, nor the movement that changed "Good Christian Men, Rejoice" into "Good Christian Friends, Rejoice." None of you will be surprised at my annoyance with celebrating Columbus Day on a day that honors not the landing of Christopher Columbus in the Americas but Americans' desire to have a long weekend.

But this year they are one and the same, and if Columbus had not made that historic landing, there's a good chance I wouldn't be here. I consider that worth a celbration!

This is not the first time God has decided that his plans are better than mine; nor shall it be the last.

After a long year of depending on supply priests to lead our Sunday services, and on non-ordained staff and congregational volunteers to provide for the needs of our people, our church has called a new rector. It will be good to get someone who will belong to us, who will be the "Father" a priest is supposed to be for his flock.

But there's a problem. After all those months of praying for "a man after your own heart, who will lead us in right thinking, right belief, right action, right worship, wisdom, and love," God's answer to that prayer was ... a woman.

I'm all for women, and for women using their gifts, skills, and talents in church. After many years in a denomination that limited church leadership to men only, I know how narrow and hard-hearted a church without feminine influence can become.

I'm also okay with women pastors and priests, at least on a theoretical level. As far as practical experience goes, however, I find their record less than stellar: some good ones, some okay, and a few truly awful. Of course that is true of male pastors as well, but on the whole I feel men do a better job, or at least are better prepared for it. I'd rather hear a man preach than a woman. Furthermore, I don't believe women should be bishops, or even rectors. I'm a big fan of mothers, but especially in a denomination that calls its priests "Father," I believe the church should be led by someone who could actually be a father. Whether a priest should have that title at all is another issue, which I'll not deal with now—but "Mother" just doesn't cut it. "Mother Church" is not an individual person, and anyone titled "Mother So-and-so" sounds like a superior sort of nun. If I must call our new rector "Mother Lo," I'll probably have to resort to "hey, you." (No disrespect meant, but it reminds me of how I interacted with my mother-in-law. She didn't want to be called "Mrs. Wightman," and I couldn't make myself call her "Alice." So we generally managed to get along without names.) A mother is not a father, and vice versa. A church, like a family, needs a father to lead it.

But hey—I've endured pastors who were out-and-out heretical, pastors whose sermons were always three times as long as they should have been, leaders who made me think they cut all the seminary classes where they were supposed to have learned people skills, and preachers whose sermons never got past the very beginnings of the Christian life. However, every one of them also had strong points, and some were fantastic. I long ago stopped hoping to find a church that would be everything I wanted, or needed.

Church life is a family dinner, not a restaurant meal.

Our choir director assures me that I will love Rev. Lo, and he's a pretty good judge of such things, so that's encouraging. I'm looking forward to seeing how God demonstrates that his disappointing answer to my prayer was the best outcome for our church—even if I only get the answer Job received to his questions: I know what I'm doing, and you do not.

Would you like to live in Connecticut?  Check out this gorgeous home in Salem.  No, we're not selling it, though we do know the owners.  And we don't want to buy it.  The bulk of our immigrant ancestors did call Connecticut home, but at this point our roots run deep in Florida's sand.  But I can't deny that the Zillow listing is very attractive.  Here's a front view, and my favorite of the inside photos

If you are interesting in learning more about the recent FlyDubai hijacking, may I again recommend MentourPilot for straightforward, knowledgeable commentary with minimal speculation. Here you can click on his latest short posts for a taste. He's still collecting authoritative data and working on a long form post, which should be fascinating when it comes.

You won't get the lastest news and gossip, but you will get what appears to be reasonable and accurate data.

It's been a long time since I've posted an update on Grace, which is of course very encouraging! But here's something Jon posted recently that demonstrate that "no news is good news" hides a life that is far from normal, even though you'd never guess it from a casual encounter. There's a lot they don't tell you when you begin a complex medical journey—or maybe they do, but it's just too overwhelming to be taken in. One cannot pour highly toxic substances into a growing body (or any body) and expect them to do no harm. And sometimes it's the (relatively) little things that have a surprisingly strong emotional impact; hearing that Grace is apparently condemned to flu and COVID shots for the rest of her life hit me very hard, though if pressed I will admit that if I could eliminate just one of the actual and potential side effects, that would be far down on my list.

Lest you think nothing has been going on, here was Grace's medical schedule since we last posted.

• 8 visits to primary care for vaccinations - she had to restart over as a baby, and get all of them over again - just one left, plus flu and COVID, which oncology told us yesterday they highly recommend for Grace since one of the chemos she received can cause long-term lung problems and she is more likely to have a harder time with respiratory illnesess.
• 3 visits to dermatology - this has gone really well, and it would have been good to meet with a dermatologist earlier, as the doctor changed out the skin meds she was on, and (perhaps in combination with figuring out thyroid dosages and lowering the Koselugo), her skin is 100% better, though as we enter into the drier winter season she'll need to use her lotions more often than she needed to over the summer.
• 1 visit to our dentist - nothing to report. Though oncology told us yesterday that one of the chemos she had causes long term teeth problems, and before pulling any teeth or major dental work, they need to check to make sure that the adult tooth exists and is in the right place, and is shaped properly, etc.
• 3 visits to endocrinology - mostly just to lay eyes on her; the doctor has been working on getting the dosage to get her thyroid levels within normal limits, and that has been a success. Oncology just said to keep an eye on it as she gains weight, as the dosages will need to change.
• 1 visit to opthamology - everything looking pretty good, though they have some concerns about "thickening" around one of her retinas, but is is good for now.
• 1 visit to neurology - we like to do combination visits with neurology and oncology to make sure we are covering the bases with NF1 and JMML.
• 2 visits to oncology - this is Dr. Santacruz at Dartmouth, who we love and who we basically consider her primary care provider, though after the conversation yesterday with Boston, we need to have some conversations with all of her providers, as it is depending a little too much on each individual to be thinking about the whole picture, and I'm not sure specialists are that good at thinking that way, and while I'm comfortable managing much of her care, it is easy for us to not connect the dots across everything.
• 1 visit to audiology - hearing is still good (even with the lower dose of the anti-tumor med, so that is good news!). There is always a question about one of the tests (air pressure/response), and from my view point, the test is greatly skewed by how the sensor is physically held into her ear, so I'm not entirely sure we are getting consistent tests to compare to each time, but the regular actual hearing tests are good, and the frequency responses are mostly normal.
• 1 visit to cardiology - this was just yesterday, so I haven't talked to anyone yet, but Heather said the report looked good. And the valves look good to my inexperienced eyes. I am going to ask someone to double check they aren't anything, as I don't remember those being there before. Gemini tells me bright spots can appear due to reflections of the ultrasound waves, so perhaps it isn't anything.
• 1 visit to pulmonology - also yesterday, and because she is considered too young for a spiromometer test, they just do a walking test while monitoring SpO2 levels, and she did fine on that. Prior to the appointment, I was wondering if they were going to have her do the spiromometer, so we practiced some in the car, and the oncologist was interested to try, partly just to get her to understand the test (everyone fails the first time they take it - I failed and the tech had to show me how to do it), but said typically they don't use that test until they are 6 or 7 years old.
• 2 visits to radiology: 1 "regular" MRI on her head/ears/eyes. Another one scheduled for November. She also got a bone density scan yesterday for the first time - the whole skeletal picture is pretty cool, so hopefully we'll get to see it in more detail than just me watching over the tech's shoulder. People with NF1 are susceptible to weak bones, etc. When Grace fractured her leg last year, they were concerned about whether it was due to NF1, but due to how it broke, decided it was due to being on steroids too long, so were less concerned about anything going forward, but she'll get a scan every year or two.
• Countless blood draws, which fortunately she doesn't mind at all.

Whew! 

Most doctors are starting to talk about longer time spans between the visits, so that will be nice to have those slow down a little. We did meet the "long term survivorship" medical team yesterday; when Grace heard about this, she said, "Oh good, more doctors!"

Nathaniel and Grace made brownies which we delivered to Boston Children's Hospital 6th West, where she stayed during the bone marrow treatment, and they were all happy to see her, both the nurses that we knew, who were especially happy, but even some other nurses thanked us for coming, that everyone likes to see success stories.

Boston oncology does want her to get a bone marrow aspirate, not entirely for chimerism, which they did via a blood test yesterday, but there are also some other things that are important to check that I didn't really understand.

And as I referenced above, there were a number of times yesterday that the oncology team said things like, "well, her <insert other specialist> will be keeping an eye on that, so we will defer to them..." Because of Grace's NF1, she gets seen more than the average JMML patient, and so the onocology team isn't as used to having so many other reports and so many other specialists watching over her. So, I just need to check to make sure that the other specialists are, in fact, actually thinking about the total picture and keeping an eye for something that might be pointing to a larger issue. Case in point, I hadn't realized that GVHD was still a concern at this point, and I think acute GVHD isn't likely, but chronic GVHD is more of a possibility, thought we've not seen anything so far that is particularly concerning. Her Boston oncology team was surprised to hear about her lack of hair growth and hair color changes, but now that she is through it, it appears it wasn't GVHD related, but I'm not sure anyone was actually thinking about that previously.

We also got some conflicting information yesterday compared to what we were told previously about the purpose of removing and freezing one of her ovaries, so we need to check into that. The nurse practitioner yesterday said that her ovary would definitely not be used for hormone therapy during puberty, but only for potential fertility later. I now know more about NF1 than I did, mostly due to being on Facebook groups with other patients and parents and watching them go through NF1 as an adult, or learning that they have NF1 after passing it onto their children, though I've attended some medical provider trainings on NF1 as well. My counsel to Grace would currently be to not have children, where previously I was thinking that would be okay, and we wanted her to be able to make that decision. The annual costs of freezing are going up, and we're now wondering if it is worth paying all that money each year if she won't eventually even use it. Apparently, hormone therapy/replacement for teenagers is reasonably well understood, so they have synthetic meds or whatever that can control and compensate for imbalances, so they are confident they wouldn't need/want her ovary for that. We need to ask some other providers about that, since if you recall, this journey started with bad information from a nurse practitioner who insisted she knew what was going on...

I know many of my readers still pray regularly and faithfully for Grace. Our gratitude is necessary but not sufficient. (If that last line is confusing to some of you, it's just me reverting to my math major roots. What I mean is, "Thank you so much!")

Let a man do right, nor trouble himself about worthless opinion; the less he heeds tongues, the less difficult will he find it to love men.

— George MacDonald, Unspoken Sermons

George MacDonald lived from 1824 to 1905, but he nailed one of the chief dangers of social media.