Lift Up Your Hearts!

The headline was admittedly clickbait: I’m QUITTING Gardening After Reading THIS, So Should YOU. And it caught me. I actually suspected that it didn't mean what it sounded like, and in the process I discovered another interesting YouTube channel.

After his brief rant, we get to see him transplanting fruit trees, dealing with gophers, demonstrating his "weedeater," and more.

On Monday, Heather told me that Grace was acting much more like herself, and in yesterday's update, Jon proclaimed, "Grace had a great day today." We can't say enough how much we appreciate (and depend on) all your prayers and good wishes.

Tangible prayers!

People have been so generous with time, effort, and gifts. The kids are eating very well back home, with people bringing meals nearly every day of the week, and generous DoorDash gift cards are enabling Heather and Jon to enjoy some of Boston's wonderful restaurants—time, not money, is their biggest constraint.

• Grace's white cell counts are on the rise: 0, 30, 60, 115..., which means Faith's cells are becoming her own and getting down to work.
• Formerly open sores are visibly healing.
• She is still sleeping a lot, but less than the previous 12-16 hours a day.
• She's now enjoying the playroom again, and going for walks up and down the hall.
• She still relies on her central line and her NG tube for nutrition, but keeps trying to eat. Apparently her taste buds are weirded out, because she tends to take a bite then spit the food out again. This is considered normal.

Since 2010, I've been keeping a record of the books I read. During this time, I've averaged 68 books per year; the smallest annual total was 33 in 2011, and the largest 108 in 2018. In 2023 I barely beat my lowest count, reading only 35 books. I really can't account for it, other than to say that life happens. We travelled a lot, family matters took up a lot of time and energy, and a couple of projects took priority (I'd like to say that one of those projects was genealogy, but that's another area that got neglected). However, nothing stands out as a reason to have read fewer than three books per month. Here's to a better 2024!

The stats from 2023:

• Total books: 35
• Fiction: 28 (80%)
• Non-fiction: 7 (20%)
• Months with most books: November (6)
• Month with fewest books: October (0)
• Most frequent authors: Brian Jacques and J.R.R. Tolkien each had four; Jeff Wheeler, Trenton Lee Stewart, and Zenna Henderson had three; other than that it was ones and twos. As I said, it was a slow year.
• Interesting fact: Nine of the 35 books I read on the recommendation of grandchildren, six were recommended by an author friend, and many of the others were an indulgence in books/authors from my childhood. I'm not making much progress on my extremely long "To Read" list, but I am having fun.

Here's the list, sorted by title; links are to reviews. The different colors in the titles only reflect whether or not you've followed a hyperlink. The ratings (★) and warnings (☢) are on a scale from 1 to 5, with 1 being the lowest/mildest. Warnings, like the ratings, are highly subjective and reflect context, perceived intended audience, and my own biases. They may be for sexual content, language, violence, worldview, or anything else that I find objectionable. Nor are they completely consistent. For example, Brandon Sanderson's books could easily rate a content warning in all of the above categories, yet they are mostly not inappropriate to the context and could be considered quite mild—for a modern book. Your mileage may vary.

There hasn't been a lot of news from Boston in the last few days. The time immediately after a bone marrow transplant is especially hard; Grace has been suffering and her parents are exhausted.

But today, Day +10, there is some light, and an update. (Heather's version of the story is here.)

This weekend, Grace's oldest brother, Jonathan, came to visit. I know she has been missing him a lot, and have no doubt that his presence was as important in its own way to her healing as the many medications she is receiving.

What's more, he was able to stay with her overnight, and give Heather and Jon some much-needed time together—healing for their own hearts!

It's a good thing Jonathan also plays the guitar, as his French horn playing, though beautiful, might not go over so well in the hospital.

Yesterday, Grace did not throw up at all, seemed to be doing better, and even managed some smiles. Many things are going on in her body, so it's impossible to pin down any single cause for her improvement, but my guess is that one factor was switching out morphine for Tylenol. Faith reacted badly to the morphine they gave her after harvesting her marrow, so it wouldn't surprise me if Grace had similar sensitivities. At any rate, at last word she was doing better without it.

If you know me, you know I'm not a fan of the Contemporary Christian Music genre, and when possible avoid worship services that feature so-called praise bands and praise songs.  But many of these songs have staying power. (Less charitably, they have a tendency to become earworms.) Like memorized prayers, they can be a powerful help in hard times.

Right now, this is a good one.  Here's a different version from the one I posted in my first post about Grace's leukemia.

I'm told that the first two weeks after a bone marrow transplant are the worst, so this reminder seems appropriate.

Today it has been a week since Grace's transplant.

I've not been regular with my updates recently, for the very good reason that we've been in Switzerland—a trip arranged Before Diagnosis—visiting Heather's sister and her family. Heather emphatically did not want us to change our plans, so off we went. After all, we can pray just as well from 4500 miles away as from a "mere" 1400 miles. And if prayers ascend faster from 40,000 feet in the air, we had that covered.

It was a very enjoyable visit, so great to see everyone there, and to meet our new granddaughter, now three months old and incredibly cute and good-natured. As you might expect, keeping up with a lively family of seven did not leave much time for blogging, especially since it had do be done painfully slowly on my phone, as we had left our computers behind.

Here are links to the Daley Ponderings posts that I missed, with my quick summaries.

Day +1 Faith has some major pain to deal with, but improves enough to be discharged to their apartment. With the oral meds put on pause, Grace is able to eat well and not vomit, but she starts getting the expected mouth sores and intestinal side effects.

Wanting to eat but not keeping it down Jon celebrates his birthday by attending Park Street Church and taking Faith home to New Hampshire. Heather is tired. Grace's diaper rash might be a bit better, but she continues to have intestinal problems, and she sleeps a lot. Her appetite is still good, but she can't keep food down.

Better but hard Day +4. Grace did not throw up all day. She has mucositis in her mouth and intestines, but not too badly.

NG tube no fun Big brother Jeremiah celebrates his birthday by coming to visit, Grace acquires an NG tube to help with meds and nutrition, but is generally feeling pretty miserable. Photo alert!

That's the last of their updates for the moment. Heather took Jeremiah home yesterday and is making an effort both to rest and to catch up with home things before she goes back tomorrow. Jon could use extra prayers: He's on his own in Boston and Grace is not feeling well at all.

(This post was originally to be an update, but I got interrupted while writing, and in my haste to save my work, I accidentally posted the picture with an interim title. Before I could get back to it, it took on a life of its own. So I'm leaving it up, but with a new title and some added text.)

We love the Green Ember books by S. D. Smith. There is an oath that is an essential part of the stories, and it begins, My place beside you, my blood for yours. This photo was taken in Transplant Day, and since Faith was literally giving her blood for Grace's, they wore their Green Ember oath shirts for the occasion.

Fun fact: Although Faith and Grace are perfect matches when it comes to a bone marrow transplant, they had different blood types. The transplant changes Grace's to be the same as Faith's.

I'm the kind of person who sees standardized, multiple-choice tests as fun puzzles. I always did well on them—but only because I learned to shut down that part of my brain that delighted in finding alternative answers, in favor of that part that could discern which answer was probably in the minds of the test-makers.

My gut wanted this t-shirt.

Sadly, the other part of my brain overruled it, insisting that there is a valid and important place for politics in our lives. What I need is a shirt that says,

Turning 
Everything
into
Politics
Ruins
Everything

A case in point:

Back in 2014, I was introduced to the hymn, Lift Every Voice and Sing. Here's what I had to say about it 10 years ago.

We arrived early at church, and having discovered that the processional hymn was a new one to us, I plunked it out on the piano several times before the director arrived. It may sound easy, but it is decidedly not if you've never heard it before. Mercifully, he took it down a whole third from what is written in our hymnal.

I would never have guessed that Lift Every Voice and Sing was an African-American song, much less the "Black National Anthem" as it is sometimes called. Not knowing the tempo at which it is apparently usually sung (judging by the YouTube recordings I listened to), I took it at a faster clip, and would have guessed it to be a World War I era song, or maybe something from the Salvation Army. If you listen to it and note that the middle part sounds like the more militant parts of Les Miserables, be assured that this was written 'way back in 1899/1900 by James Weldon Johnson and his brother John Rosamond Johnson.

Our church usually sings that hymn on a Sunday near to the Martin Luther King Jr. holiday, and I love it, despite the fact that I'm not really comfortable with singing it in a worship service. I get uncomfortable when we sing music in worship that honors secular occasions, such as Independence Day, Veterans Day, Mothers Day, etc. I can't really say it's wrong, but it makes me uncomfortable.

Nonetheless, Lift Up Your Voice and Sing is a powerful song, and I was excited a few weeks ago when I learned that it is going to be performed during this year's Super Bowl. I made a comment to that effect, and was shocked at the can of worms I opened. First of all, I revealed my complete ignorance of football games in general and the Super Bowl in particular, by stating that I sure hoped they would sing all the verses, because the words are very important for our time. How was I supposed to know that the attention spans of football fans are so small they wouldn't tolerate more than one verse? (There are only three.)

There are some songs in which some verses can be removed without doing damage to the meaning—and other songs where that is decidedly not true. You'd be amazed at how often a church will sing only the first verse of A Mighty Fortress Is Our God, which leaves off at a most unfortunate place.

A mighty Fortress is our God,
A Bulwark never failing;
Our Helper He amid the flood,
Of mortal ills prevailing.
For still our ancient foe
His craft and power are great,
And armed with cruel and hate,
On earth is not his equal.

I mean, really?  You want to stop there?

Our own Star Spangled Banner, when sung, almost never includes my favorite verse:

Oh! thus be it ever, when free men shall stand
Between their loved home and the war's desolation!
Blest with vict'ry and peace, may the heav'n-rescued land
Praise the Pow'r that hath made and preserved us a nation.
Then conquer we must, when our cause it is just,
And this be our motto: "In God is our trust."
O'er the land of the free and the home of the brave!

Lift Every Voice and Sing deserves (and needs) all of its verses.

But worse was yet to come. I then learned that the singing of this song had become a football of the political variety. I don't know what all was said; I'm deliberately avoiding it, and I certainly will be avoiding the Super Bowl for other reasons. But it's a shame, because this is a marvellous anthem full of faith, hope, caution, history, and patriotism, suitable for anyone who has struggled through difficulties and still faces challenges.

So here, since you are highly unlikely to hear them performed at the upcoming game, are all the verses of Lift Up Your Voice and Sing.

Lift every voice and sing,
’Til earth and heaven ring,
Ring with the harmonies of Liberty;
Let our rejoicing rise
High as the listening skies,
Let it resound loud as the rolling sea. Sing a song full of the faith that the dark past has taught us,
Sing a song full of the hope that the present has brought us;
Facing the rising sun of our new day begun,
Let us march on ’til victory is won.

Stony the road we trod,
Bitter the chastening rod,
Felt in the days when hope unborn had died;
Yet with a steady beat,
Have not our weary feet
Come to the place for which our fathers sighed.
We have come over a way that with tears has been watered,
We have come, treading our path through the blood of the slaughtered,
Out from the gloomy past,
’Til now we stand at last
Where the white gleam of our bright star is cast.

God of our weary years,
God of our silent tears,
Thou who has brought us thus far on the way;
Thou who has by Thy might
Led us into the light,
Keep us forever in the path, we pray.
Lest our feet stray from the places, our God, where we met Thee,
Lest our hearts drunk with the wine of the world, we forget Thee;
Shadowed beneath Thy hand,
May we forever stand,
True to our God,
True to our native land.

There's no way I can do better than Heather at describing Transplant Day:

I'm sorry I can't make the link fancy now. Working without my computer is harder than I expected.  [Update: fixed now, since I'm back with my computer and not trying to work on my phone.]

The transplant is accomplished!  Now the hard work begins.

Faith has successfully given her bone marrow, and Grace should start receiving it at about 3:30. Sorry I can't be more loquacious, but Heather has a longer post. https://jon.limedaley.com/plog/post/day-0-waiting

Heather wrote a long, catch-up post (with pictures) here. Here's my Cliff Notes version.

Because they are killing off Grace's bone marrow, she received a blood transfusion on Sunday. That's not unusual in her situation, but I note it because Porter and I gave blood only a few days earlier. Of course, it didn't go to Grace, but to someone in the Central Florida area—and we've been giving blood for a long time—but it does give a different perspective to contemplate the fact that other people's blood donations have saved our granddaughter's life.

You know Grace isn't feeling well when it affects her appetite. That's the chemo-induced nausea. She can tolerate food, but there's not much point in eating when your required oral meds cause you to throw it all up. Still, the doctors say she's doing very well.

Chemo 3 of 3 is done.  Today she rests (from chemo, not from her multitudinous other medications). Tomorrow is the BIG DAY for Grace, and for Faith.

Jon held the fort at the hospital yesterday while Heather took Nathaniel (who had been visiting) home, spent time with the other kids, and prepared to bring Faith to Boston today.

I'll let Heather have the last word.

Please pray that Grace will tolerate her oral medicine; that Faith’s surgery will be successful and without complications; that the chemo has done its job in eliminating Grace’s own bone marrow; that infections will stay away; that Faith’s marrow will grow strong in Grace’s body and be her cure!

Thank you all so very much for your prayers and support. It’s a hard journey, but we are so blessed.

If you ordered a Team Victory t-shirt, they are now in.  See this link for details.

Grace is now into her second chemo drug, and this one can cause crystals like shards of glass in the bladder if not flushed with a lot of water, so Grace is getting a lot of liquid through her central line, so much so that she doesn't want to drink. That may also be a side effect of the nausea she is now experiencing. She ate a good amount of scrambled eggs for breakfast, but not much since then, and she is no longer as happy as she was when we enjoyed an early morning Skype and she showed off her bright yellow grippy socks.

The good news is that she had an opportunity to play with one of her siblings yesterday. Boston Children's has learned that sibling interaction is actually an important force in healing! Also, she plays in the playroom and with hospital volunteers, so it's not a completely sterile situation, despite the airlock-style doors. Not that they're careless; visitors must have no symptoms of illness, and toys are cleaned after use.

Tomorrow, on Day -2, Grace will get her final chemo before transplant. Day -1 is a day of rest, when Faith will come to Boston for her part in this journey. On Day 0, which is February 8, Faith will make her donation in the morning, and Grace will receive her new, healthy bone marrow cells in the afternoon!

Prayer requests:

• Minimal nausea and healthful eating for Grace
• That everyone, especially Faith and Grace, will stay healthy
• The the transplant will proceed as it should, without any hitches

As usual, more details are here.

The first video is from Task & Purpose, and presents a brief history of tiny El Salvador, the progress that has been made against the powerful gangs that have held the country hostage, and at what cost that progress has come. Insights into how previous political mistakes can turn around and bite you, especially if you insist on compounding them with present political mistakes. Plus the question: How much liberty are we prepared to give up in the name of safety? We surrendered much in the face of COVID, which for most of us was a very mild threat. What would we do if threatened by violent, merciless, implacable gang rule?

Think about that next time you watch the world pouring over the Texas-Mexico border and spreading throughout the country. (21 minutes)

For over 60 years our educational system has been fixated on our ignorance of math and science. (Not that we've done much to ameliorate the problem, but at least we pretend to try.) For much of my life I was on board with that, being a fan of the hard sciences, with little respect for social sciences and humanities. The older I get, however, the more I realize that our greatest educational lack, the deficit far more likely to make our lives miserable or even kill us, is in history and current events. That which hath been is now; and that which is to be hath already been. "It can't happen here" (or now, or in my family/town/nation) is a critically dangerous attitude.

Bret Weinstein, who himself lived for a while in Panama, visited the infamous Darien Gap, a gauntlet that kills many and maims most of the migrant families as they fight their way to the Mexico/U.S. border. In the process, he discovers evidence of not one, but two migrations: a migration driven by the pursuit of greater economic opportunities in the United States, which includes people from all over the world, and a lot of families; and a second, cryptic migration which includes mostly people from China, of military age, heavily skewed towards men. Bret and Heather discuss his visit, and his resulting hypotheses about our border crisis, on DarkHorse Podcast #210. I have not actually made time yet to see that podcast, which is an hour and three-quarters long, but here's Tucker Carlson's interview with Bret, which covers the story very effectively. It's an hour long itself, but worth every minute, if you can fit it into the interstices of your day. Or get hooked, as I did, and watch, transfixed, from beginning to end. I prefer to hear the normal pace of the interview, but it also works well at higher speeds.

And neither of these videos considers how much the Mexican drug lords would love to spread their control throughout the United States.

As my daughter said recently: We all have our own kind of hard. Her attention at the moment is on holding her family together while their two-year-old daughter fights for her life against a rare form of leukemia. And it is meet and right so to do.

We all have our own kind of hard, and most of us are overwhelmed.

How can I help our granddaughter and her family in the struggle for her life? In small ways of encouragement, and especially by prayer.

How can I help in the struggle to make the world a good place for her to live that life? I can pray, and I can vote, two of the most powerful actions. I can also keep my eyes open, learn, think, and write, in my very small corner of the Internet. 

If [a watchman] sees the sword coming upon the land and blows the trumpet and warns the people, then if any one who hears the sound of the trumpet does not take warning, and the sword comes and takes him away, his blood shall be upon his own head. He heard the sound of the trumpet, and did not take warning; his blood shall be upon himself. But if he had taken warning, he would have saved his life. But if the watchman sees the sword coming and does not blow the trumpet, so that the people are not warned, and the sword comes, and takes any one of them, that man is taken away in his iniquity, but his blood I will require at the watchman’s hand. (Ezekiel 33:3-6)

No one, not even those who do not already feel overwhelmed with critical duties, can keep up with all the sources of danger, but it behooves us to find and listen to those who do the watchman's work. I am not a watchman, but I am a watcher of the watchmen, and what I learn I like to share here. What others take from my writings is not my responsibility; but woe to me if I see a sword coming and don't blow my little trumpet.

I've been through the countdown/up before, having followed the leukemia/transplant journey of a friend's grandson, who was diagnosed at just a few months older than Grace. Transplant is Day 0, and each day following (+1, +10, +300) marks a victory. If all goes as planned, today is Day -7.

Heather gives a great update, with far more detail, on their blog, but here's the board book version:

• Grace is starting to show some side effects (e.g. dizziness, and sleeping more than usual), but generally holding strong and being her usual cheery self. Except when she had to fast four hours before a two-hour ultrasound. If you want to see Grace grumpy, just get between her and the food.
• Chemo began yesterday, and continues on an every-six-hour schedule, day and night, with blood draws every half hour. Another reason to be glad for her central line!
• In addition to the chemotherapy itself, Grace is getting an overwhelming number of medications, both through her line and by mouth. For a family accustomed to doing a lot of research before acquiescing to any medications, it is difficult to find yourself in a position where that can't be done, and you must simply trust the doctors and pray.
• Jon spent last night at the hospital with Grace, and they had a really great play time after she was finally released (temporarily) from the lines that tied her down and tripped her up.
• In addition to all the other reasons Heather is grateful for Jon, he took over the job of filing W-2 forms. ("The rest of the world does not stop just because our child has leukemia.")
• Heather settled into the apartment, and laughed at her own greenhorn status as a small-town girl in the big city.
• The staff continues to be considerate and helpful; in this case, someone found them a large play mat for the floor of Grace's room.
• Whatever one might say about the bad effects of "screen time," being able to video chat and play online board games with your children back home is a great blessing. Grace loves being able to see and interact with her siblings.
• They met a chaplain.
• The doctors are happy with Grace's progress so far.

I'll let Heather have the final word; I've highlighted the specific prayer requests.

Thank you all again; we are being sustained, and Grace is holding strong.  Keep it up!

Specific requests for now is that Grace's cultures come back negative so she will be allowed out of the room to walk and play. And that Faith will be protected from sickness this week as she also prepares for her big day.

Lots of love to you all.

UPDATE 2/2, answer to prayer.  I put this in a comment, then decided I needed to include the picture.  Even better, she's obviously feeling well enough to take advantage of it.