Lift Up Your Hearts!

I love my dad's sense of humor.

Here's another story from his journals, this time from a four-week cross-country car trip we took in the summer of 1968. When we weren't visiting relatives, we camped in a small tent-trailer, at inexpensive campgrounds. Some were wonderful, most were fine, and a few were less so. Of the North Woods Motor Court and Campground, which as far as I can tell no longer exists, Dad said,

It looks like the owner is fixing things up in his spare time, and he hasn't had much spare time.

There were only two picnic tables, and one bathroom. But with only four families staying, that worked out all right, and we were just thrilled to be camping on green grass for the first time in quite a while. It's only worth writing about because Dad's comment makes me laugh.

And also because this campground was the scene of our Great Skunk Adventure, but that is another story.

Here's another observation from reading my father's journals, this one from April 1963.

About 11 a.m. I went out to the car to go out to the Research Lab and the car ('57 Ford) wouldn't start. It was not firing at all. I spent the better part of the lunch hour convincing myself there was no spark. Blackie (the guard at the Building 37 gate) called the man from the GE garage who diagnosed it as a bad condenser.

Since he was not in a position to make repairs, I called the AAA for the first time in years. On the telephone I told the girl that it was not a dead battery and that the trouble had been diagnosed as a bad capacitor. I had hoped this would at least forewarn the man who came, even though he would no doubt want to make his own diagnosis. So in about half an hour he showed up with the question, "What's the matter? Dead battery?"

All he would do was to diagnose the trouble as a bad coil and tow me somewhere. I had him tow me to Dorazio's service station where I left the car to get yet another diagnosis.

Fifty years later and customer service experiences don't look much different. Especially if you try to give them information or ask them to go off-script. After much phone time and several questionable attempts at a fix, a well-known bank is still sending us multiple copies of each e-mail, and they are not interested in hearing what we already know about the problem.

I don't have time this morning to do the post justice, but before I start off on our day of adventure I must pass on a specific prayer request for Grace today: She is scheduled for a bone marrow aspiration. In Heather's words: This includes anesthesia and intubation and all that goes along with that. Please pray for her surgery and for the results. Thank you.

Grace's first day of freedom—or rather, more freedom than she has had in well over a month—went well, for the most part. You can read much more about it here. And see some photos here. The hard part was returning to the hospital for a clinic visit. Boston Children's is great with children in so many ways, but there are some holes, and this was one of them. The poor child had tasted freedom for less than 24 hours when she found herself back in the hospital again, not in friendly 6 West, but in a place not suited for her situation. Because of her newborn immune system, she was not allowed to go to the Resource Room with toys and books, but was confined to the small clinic room with nothing to do but wait, and wait, and wait.

Imagine how she must have felt. Heather says she leaned her head against the door and cried, and cried, and screamed. She had endured all that went before with incredible patience and grace and a great attitude—and now this.

However, Heather was able to persuade a nurse to bring her some books. And next time they will be better prepared; one thing Boston Children's is less good at is communication about what is going to happen!

The good news is that medically the clinic visit was uneventful.

Settling in to life "outside" is taking some adjustment, but is happening. They even dealt successfully with their first NG tube clog.

When Grace woke up, we saw that her food bag was still full! Her NG tube had clogged. Both of us tried to flush it with no success. Jon had a terrible time getting through to the right people at the clinic (and that mis-routing of request ended up getting escalated to superiors.) By the time the right person called back to schedule an appointment to put in a new NG tube, Jon had tried again and this time successfully unclogged it! By the way, the nurse said, "Try Coke; we've had great success unclogging tubes with it," and Jon says that's the first time he's been in a store debating about the medicinal qualities of brand name vs. generic coke....

And here is the heart healing part. Look at this wonderful picture!

Our second-oldest grandson, the Aviator (otherwise known as the Baker), made his first solo flight last week!

And today, Grace was cleared to take off from the hospital and move into their new apartment. Not home, but home-away-from-home. She walked off the floor and into the outside world for the first time in what? More than five weeks?

What does this mean? Here's what I think is right:

• She will return to the hospital for "clinics" a minimum of three times per week, one purpose of which is to make sure the delicate dance between her healing body and her medications keeps on track. Another is to keep checking on her liver and all those other bodily systems that need to be working right.
• She will be receiving nutrition and all her medications through her NG tube; the container's in her backpack, which looks mighty heavy for such a little girl.
• Of course she will continue to be encouraged to eat food by mouth. The other day she managed a half a piece of bacon and some Skittles!
• Her central line is still necessary for testing and other things that might come up.
• Her parents are now responsible for administering a long and confusing list of medications. They're engineers, and probably have a spreadsheet or some such to help.
• There will be a bunch of new rules and routines to get accustomed to.
• Prayers are still very much needed!

Speaking of flying, Grace's two older sisters took advantage of the Boston connection to participate in MIT's Spark program this weekend!

I've lost much of my faith in the New York Times, the motto of which seems to have evolved from "All the news that's fit to print" (first generations) to "All the news that fits, we print" (my generation) to "All the news we think you're fit to hear" (now). Still, I think they might have gotten something right in this recent article: Morning Person? You Might Have Neanderthal Genes to Thank. If you find that behind a pay wall, here's the relevant part:

Neanderthals were morning people, a new study suggests. And some humans today who like getting up early might credit genes they inherited from their Neanderthal ancestors. The new study compared DNA in living humans with genetic material retrieved from Neanderthal fossils. It turns out that Neanderthals carried some of the same clock-related genetic variants as do people who report being early risers.

I'm not surprised. Supposedly, I have more Neanderthal genes than 91% of all those who have been tested by the popular 23andMe system. And I'm definitely a morning person. I generally wake up naturally between 4:00 and 5:30 a.m. bright-eyed-and-bushy-tailed. "Sleeping in" means sleeping till 7; that's rare, and generally doesn't happen unless I'm sick ir out of town.  I'm not sure why the latter changes my sleep patterns; I'm sure it's part the change in daylight hours, and in part that my routines have been interrupted. In any case, I do my best work in the morning, and unless I'm hot-and-heavy into some interesting work, I'm pretty much useless after 9 p.m.

The odd thing is that I didn't discover my morning-personhood until later in life. Clearly environment has a strong effect. My parents were much more night owls than I am, routinely staying up past 11 p.m., which influenced my own bedtime. And a life ruled by prime-time TV hours (8 p.m. to 11 p.m.) and morning alarm clocks (school or jobs) is automatically a life of disrupted circadian rhythms.

It was our children who introduced me to the joys of the early morning hours. I didn't realize it so much at the time, as they also introduced me to the phenomenon of chronic sleep deprivation. I was getting up early, but also staying up late. As every parent knows, when you have children, that slice of time we like to call "our own" diminishes drastically. Our kids may have been in bed by eight o'clock, but I habitually stayed up until 11 simply because it was the only time I could do any kind of concentrated work. Not that you could call it quality time for the way my brain works, but I tried.

Thank you, dear Neanderthal ancestors, for giving me the genes to enjoy God's beautiful mornings. It's great to finally be in a position where I can take advantage of them. I could insert here a rant against Daylight Saving Time here, but you already know how I feel about that!

It's Day +33 for Grace, and suddenly things are looking more positive. I have no official updates since Day +30, but yesterday our video call with Heather and Grace was missing something. Grace was in the playroom without that monstrous, well-festooned pole that had followed her everywhere! In its place she wore a backpack that holds the nutrition and medications that flow through her NG tube. She claims it's too heavy, but it gives her more freedom, and perhaps by now she's had a chance to get accustomed to it. It's another step towards being discharged from the hospital, which is suddenly looking to be something that might actually happen soon.

"Discharged," however, doesn't mean she gets to go home yet—and with good reason. But she'll get to be at the apartment with her family, only a few blocks from the hospital in case there's an urgent need, and where she can come into clinics three times a week. It's a big step!

I can't emphasize enough the benefit of Boston Children's liberal visitation policy for the mental health of not only Grace but of the rest of her family. Which made me think about how horrible it must have been to be in this situation during the covid lockdowns, and led me to a realization—which was not my own, but Heather's, though I've expanded on it.

It's no secret that we've all been frustrated by the fact that it took so long to get Grace a correct diagnosis, when the signs were clearly visible when she was much less than a year old. When Heather reported her suspicions, her concerns were dismissed and she was berated for doing her own internet research. For almost two years multiple doctors insisted that Grace's persistent intestinal problems were just food allergies that she would outgrow. But that was incredibly, dangerously, wrong—and she went in a week's time from "I'm still certain it's food allergies" to "Get this child to the emergency room NOW!" I think there's every reason to be angry about this—all the more so because we know other people to whom very similar scenarios have happened.

But what if Grace's leukemia had been discovered when it "should" have been? The covid lockdown and vaccination requirement days were an especially dark time for those in need of medical care. Nothing justifies having so badly missed an obvious diagnosis, but maybe, just maybe, this is the better time.

From Dad's journals, January 1967

This happened at a meeting for Girl Scout parents:

The main purpose of the meeting was to discuss finances for the European trip, but Mrs. B. did mention that as a part of their challenge work, they had had some discussions of dating. Questions had come up like "How far do you let a boy go on a first date?" and "What is heavy petting?" Apparently one of the girls answered the questions in hair-raising detail as she had been told from a senior girl. Mrs. B. felt that the girls needed answers to some of these questions, but were hesitant to ask their parents, so she was suggesting we have a talk with our daughters. Then she turned to me and said, "You don't have to worry about Linda—she said that if she had a million dollars she would buy a science lab and lock herself in."

That's not what I would do with a million dollars now, but I still think it was a reasonable answer.

I enjoy reading these journals both when Dad describes events that I remember in clear detail, and those—like this one—of which I remember nothing at all.

It's Day +29 for Grace, and the last official update I have is for Day +27, but she is making progress. We've been doing some video calls, and the hardest one was a few days ago, when she was so obviously very tired and in pain. But since then she has seemed perkier and even managed some heart-warming smiles.

She is back on NG tube feeds instead of IV, and they are not so hard on her liver. She's even managed a few sips and bites, though a lot of what goes in is still vomited up. She has been known to become nauseated when hearing someone talk about food, and when looking through her sign language book and coming to food-related signs. To be willing to try sips and bites is progress—and courage!

Her liver is still struggling with veno-occlusive disease, but they expect it to recover in a week or two, all going as it should.

Last I knew here ANC was 1230.

They also did a chimerism test, which measures the percentage of her cells that are Faith's. The goal is 100%, and I know that later on in the process anything less is scary, since it could signal the start of a relapse. But the medical people were pleased that Grace's chimerism is 97% so early in the course of events.

Then there are always non-medical issues to deal with, such as an HVAC failure that made them have to switch rooms (hopefully for just a short time) and the need to find another apartment because their stay at the current one is about to run out.

But I need to run, so that's the better news update for now.

Like many people this morning, I tried to check Facebook.

Oh, crap, they're making me log in again, and they've changed the system. I hate it when they take a working system and try to make it "easier." Just click the profile picture of the account you want.

Forget it, I'll log in the regular way. Nope, that doesn't work.

[After trying other options] Okay, I'll play. Click the image. Put in password. Invalid password? Are you kidding me? [Double check password] No, that's the right one. Now what?

Forget it, I'll just use my phone. What? They're forcing me to log out? And still saying invalid password?

[Resort to Google] No new news.

[Ask my friends] Can you get into Facebook? Okay, they have the same problem.

[Try Google again] Looks like a global problem. Instagram and Messenger are also down.

[Check Twitter] Hmm, lots of people gloating.

So, is it Chinese/Russian/North Korean hackers who now have all our passwords and personal information?

My own theory is that the Meta folks decided to implement some login changes, threw the new code in without adequate testing, and screwed everything up. This is based on my all-too-real experience with the way software is written, tested, and implemented these days. (If that sounds like our recent experience with pharmaceuticals, well, yes, but that's a story for another time.)

I really don't want to give up Facebook. Like it or not, even though I have my very own blog, it's through cross-posts on Facebook that I keep in touch with a number of friends. But maybe I could get used to it, like getting accustomed to having just one car after 40 years with two. Maybe it could be fun for a while, as when power outages force you to read a book instead of watch TV.

Looking over old medical records, something caught my eye: our left-handed child's first tooth was the lower-right central incisor, and our right-handed child's first tooth was the lower-left central incisor.

Two data points don't tell you much, so I expanded the question to those of our grandchildren for whom I had that data. This raised the sample size to nine.

As you can see, in every case but #4, there is an inverse correlation between the side of first tooth eruption and handedness.

Nine is still a very small sample size, but it was enough to send me to the internet. Here's what a brief search unearthed.

• The writers of scientific papers need some serious help in their use of language.
• Some of them also appear to have a problem with arithmetic.
• Apparently, the idea of a correlation between first tooth eruption and handedness is indeed a thing, and not just my observation.
• It is true that there seems to be a statistically significant correlation between first tooth position and handedness.
• However, the correlation does not match my observations, since the researchers found it to be a direct correlation, rather than inverse.
• It's possible that our grandson Noah (#4) is the only normal one among us.

Well, that was a bit of fun, but in all seriousness, it's one more nail in the coffin of my faith in the reliability of our scientific publications. This is nothing knew; it began when I worked in a university medical research laboratory. (I have all of one published scientific paper to my name, though several others have my fingerprints on them.) There I observed first-hand the politics and good-ol'-boy networking that goes into getting a paper published. Subsequent years and experience have only made the situation more obvious.

In this case, I have neither the scientific nor the mathematical expertise to critique the science, nor do I want to spend much time trying to understand the papers. But it didn't take more than a few minutes of reading to catch some glaring errors.

Thanks to Automated Idiocy, scammers are getting more proficient. Do you remember when the e-mails informing you that you could gain access to a million-dollar inheritance, if you'd only send a small fee of $50 to someone in Nigeria, were easily distinguishable by their terrible spelling and grammar? Finding this kind of error in a scientific journal makes me want to send it to the spam folder.

Granted, the authors of the papers may not have English as their native language. And the errors in arithmetic may be simple typos. But how were these obvious faults not caught in peer review? And where were the editors? A journal is only as good as the papers it publishes, so it should be in their best interest to vet carefully what they choose to print.

Something doesn't add up here.

The last several days have been very difficult, but things are looking up. Daley Family posts are here, here, and here. Highlights:

• The night of February 29 was so rough they almost sent Grace to the ICU. At 2:00 a.m., Heather called her sister in Switzerland for emergency prayers. Turns out that there is at least one advantage to having family six time zones away, where it was a more reasonable 8 eight o'clock in the morning.
• The team decided to increase Grace's oxygen supply, after which her breathing improved, and they cancelled the ICU plans. However, as it turned out, the nurse had actually turned the wrong valve. I don't know the details, but I think there are two oxygen supplies and she didn't notice that the tube had been moved from one to the other? Something like that. It's nice to know that sometimes (maybe frequently!) the grace of God covers our mistakes.
• Ultrasounds made it clear that Grace does have VOD (veno-occlusive disease) in her liver. It is not uncommon in her situation, and since the transplant she has been on three separate drugs to help prevent it. Don't bother to look it up; it's too scary. But they expect her body to be able to heal itself with time.
• They put a drain in her abdomen and have removed a considerable amount of fluid, which has helped.
• Grace moved to a new room, which has to happen every 30 days for a thorough cleaning, and the new room is even nicer than the first one!
• Despite her looking like such a sick and miserable girl, and spending much of her time sleeping, there was good news: on March first Grace's ANC was 700, which completed her third day of ANC over 500: Engraftment is now official. From the Be the Match bone marrow donation site, "Engraftment means your new cells are working properly and starting to rebuild your immune system. Engraftment marks the start of your recovery process. White blood cells are the first cells to engraft, followed by red blood cells and platelets."
• Today (March 3) was a much more encouraging update. They are still draining fluid, but apparently all is going in the right direction. Things are less swollen, and she is breathing better.
• They restarted giving her nutrition through the NG tube, which is good news. She began sitting up again, and talking. She even asked for food; she didn't eat it, but that's still a move in the right direction.
• The doctors are happy with her progress.
• Today her ANC was 1200! I don't know what they're aiming for, but I read that for a child 1500 is considered normal.

This excerpt from my dad's journals is personal, and has to do with my parents' attempts to encourage me to be a normal, American girl. I still don't know why they would have wanted that; neither one of them was normal, at least not in the sense of average. Don't get me wrong: they were great people.  But my mother was a mathematician and my father an engineer, which put them pretty clearly in the square-peg-in-round-hole category. What did they expect of me?

In this case, the round hole involved dancing.

As far back as I can remember, I have had no interest whatsoever in dancing. I don't know why. I'm not nor have I ever been a Baptist or one of those other denominations that discourages the practice; I simply don't care for it. At various times in my life, other people have attempted to fix this defect in my character, all with negative results. As far as I can recall, this was the first such effort. I was in eighth grade.

Tonight Linda started taking dancing lessons at the YWCA—somewhat reluctantly, I think, but I cannot be sure. Mrs. L. called Lynn to see if Linda was interested since she was signing up [her daughter] E., and Lynn agreed, primarily on the basis that if Linda wants to go to the Spring Dance, she should know how to dance. Linda argues that she does not need to know how to dance to go to the Spring Dance. But whether she is really as reluctant as she would like to let on, I don't know.

Yes, well yes, I was. Reluctant. And if I had ever expressed any interest in the Spring Dance, which I doubt, it was probably something I had accepted as one of the many stupid things school tried to impose on us, and I had not yet learned the lesson of "Do not affirm. Do not comply." Besides, my friends were doing it. (Surely one of the worst reasons ever for doing something stupid, but I digress.)

I don't blame my parents for pushing me to do things I didn't like, any more than I blame them for trying to get me to like beets. I finally won the beet battle when they realized that every bite of beets I swallowed was likely to come back up, quickly. But sometimes a little push can open up new and delightful experiences. And apparently I was notoriously hard to read: Dad's journals are filled with comments like, "Once again, I have no idea whether Linda enjoyed the experience or not."

I survived the dance lessons, I think without permanent trauma. I even tried one more time, in a ballroom dance class at the University of Rochester. That didn't take, either.

For the record, the U of R also offered folk dancing classes. (These, like the ballroom dancing, were informal, not regular college courses.) To this, I had the diametrically opposite response. I LOVED folk dancing. I can't say I was very good at it, but that didn't matter, because it was so much fun! Why? I'm not sure; it was a long time ago. But I know I enjoyed the music, and the lively movement, and I especially enjoyed the fact that everyone danced together, without being matched up, except briefly, with any particular partner.

Have I ever tried to find folk dancing again? I did once investigate a local club, but was put off by the fact that everyone was required to bring a partner to the meetings—so it was obvious that it was not the kind of dancing I was looking for. Besides, the last thing I need is yet another activity in my life. I'm really quite happy being dance-free!

(But I'm still not inclined to become a Baptist.)

With the help of my God I can leap over a wall. (from Psalm 18)

Happy Leap Year Day to you all!

Would you please pray that God will help Grace leap over the wall of problems with her liver that were revealed in yesterday's ultrasound, and are probably the cause of her abdominal distension and increased pain?  I don't know yet what the specific issues are, but God knows.

Also, Heather is home in New Hampshire for a few days, so Jon is dealing by himself with everything at the hospital. He could use your extra prayers as well.

When you need something to feel grateful for, take time to consider the miracle of how well your body manages all its incredibly complex systems. We have no idea, unless something goes drastically wrong. This hit home to me, once again, when I saw this picture of what it means when Grace "goes for a walk." (Click photo to enlarge.)

Plus Side: The doctors are pleased that her stool output is improving, and were poised to restart feeds, but...

Minus Side: Her abdomen is distended and she's been struggling with pain, so they're sending her for an ultrasound to rule out something called VOD, which does not stand for Video On Demand, in case you were wondering. But...

Plus Side: In between pain episodes and sleeping, she's still interested in playing. In Heather's words, "She loves the routine of taking vitals, and this time she spent quite a long time taking her own blood pressure, and even tried it on the doll for a while. We go through a lot of O2 monitor stickers because she likes to put it on and off herself."

(Is that not an adorable little blood pressure cuff? Not to mention the person using it!)

One more Plus Side: Her ANC is 610! When she manages three days in a row over 500 she have officially achieved engraftment. She has also received her first transfusion of blood with her new blood type. This is great, but engraftment is often accompanied by bone pain, which may be part of her problem. Which I assume is better than liver problems (VOD).

So many things to be thankful for. So many things still to pray about. As usual, more details (and more pictures!) are on the Daley blog.

There may be a later update tonight, but it's my bedtime, and three of Grace's four brothers are visiting, so I don't really expect Heather and Jon to have time to write. But I can give you a little.

• The attending physician rotates every two weeks, and most of them are great, but they are having problems with one; please pray for better understanding and communication.
• So many of the people attending to Grace keep changing around, but their social worker and her "child life specialist" provide much-needed continuity and advocacy. I'm gaining more respect for these positions than I had previously.
• Hospital volunteers, too, can be worth their weight in gold, giving parents much-needed breaks to attend to their own mental and physical health.
• I am so grateful for Boston Children's liberal visitation policies. The opportunity for Grace to see her siblings is so good for her mental health, and good mental health, I'm convinced, is crucial for physical health.
• Life is not all seriousness in this very serious time: Jon and the boys took the opportunity of their visit to spend the afternoon at Boda Borg!
• Grace is struggling with pain, though morphine "pushes" perk her back up again. They had stopped the continuous morphine, perhaps a little too soon. The mere thought of that little girl dependent on morphine tears me apart. I have to assume the doctors know what they're doing, and I certainly understand that pain can interfere with healing. But I hope that she won't need it for very long.
• Her ANC was up to 330 today, a good jump from the 100-200 it's been for several days. We pray that those new cells will get right to work healing her gut!
• When she gets to 500 she will have reached the "engrafted" stage.