Lift Up Your Hearts!

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.