Lift Up Your Hearts!

It's been a while since a Grace update, but the news is good, as the family is settling back into life together. Here's what the Daleys wrote—for pictures you can check out their blog.

As they say, no news is good news. Not much exciting has been going on lately. Grace is eating a fairly regular diet at meals, which has always been pretty small. Yesterday, she drank a lot, which hasn't been common for her, so we give her 600ml of water via her NG tube, 50ml every hour throughout the day. She gets 2 bottles of baby formula 50ml/hour throughout the day, which means she doesn't have to be on the pump at night, which is nice for everyone involved.

We thought she had c-diff last week, as the symptoms returned shortly after getting off the antibiotic, but the test came back negative, and her symptoms have mostly resolved, so perhaps it was just related to a switch from magnesium sulfate to magnesium oxide for a few days due to it being impossible to get from a pharmacy within an hour of us. Heather had to crush up the pills and make a solution herself, which you would have thought a pharmacy could do... But, she is back on her regular magnesium sulfate now, and we just have to remember to schedule and pickup a few medications at the Dana Farber pharmacy when we go for weekly clinic visits.

Jon has returned to work, with mostly regular hours. The family is happy to be back together and enjoying conversation and games and just regular life together.

Grace has a bone marrow aspirate scheduled for tomorrow, to verify that everything is working as it should, and we expect those results to be good. She'll get another one around day 100 and that is the next milestone we are looking forward to, as she should be able to get off cyclosporine at that point, which causes lots of side-effects, so the other medications can stop soon after that.

One such side effect that we had heard about but she had not experienced until this week is that she is growing hair on her face and ears, so think of a combination of teenager peach fuzz and old man hairy ears and eyebrows, and you'll have a good idea of what it looks like.

Grace often asks if the baby is awake and likes to feel its kicks. Heather has been feeling pretty big, and measurements confirm it and there is a question if there are any tests to do (glucose or an ultrasound). We've been joking about whether there is a hidden twin, but we're pretty sure there isn't. 

The BMA mentioned for "tomorrow" was yesterday. She's never minded them before, but this time they had to poke her twice, so she's a little sore. The hair-in-unwanted-places story reminds me of the well-known fact that a dieting woman will lose weight from her bust sooner and faster than from her hips....

All continuing to go well, Grace will return to her New Hampshire home on Monday! This is huge for her and for the whole family.

She will need to return to Boston once or twice each week for clinic visits. At some point, the Dartmouth hospital should be able to handle some of the appointments, but for now, they've decided it's worth the long drives to be able to have the family all together. After all, they've been driving almost that much going the other direction while living in Boston.

Grace has had less nausea, has gotten her formula intake down to 16 ounces per day, is eating more on her own, and is steadily gaining weight. Thanks be to God and all your prayers!

Please pray for:

• Continued progress for Grace
• A smooth transition back to being a family all together.
• Wisdom for Heather, Jon, and the doctors as they figure out the best way to keep Grace healthy while reintegrating her into normal family life.
• Strength for Heather as she handles the normally-exhausting late stages of pregnancy.
• The birth and the baby. I'm rooting for a girl, and in my mind I've already named her "Hope"—but I have a less-than-stellar batting average when it comes to baby guesses.

Grace's next milestone will be the three-month mark (May 8), where if all things continue to go well, her transplant will be considered to be successful. It's only the next of many more steps, but it's an important one.

In view of the trials our family has been experiencing recently, and because it has been fourteen years since I published it in 2010, I decided to bring back a previous Good Friday post.

Is there anything worse than excruciating physical, mental, emotional, and spiritual torture and death?

It takes nothing from the sufferings of Christ commemorated this Holy Week to pause and consider a couple of other important persons in the drama.

I find the following hymn to be one of the most powerful and moving of the season. For obvious reasons, it is usually sung on Palm Sunday, but the verses reach all the way through to Easter.

Ride on! ride on in majesty!
Hark! all the tribes hosanna cry;
Thy humble beast pursues his road
with palms and scattered garments strowed.

Ride on! ride on in majesty!
In lowly pomp ride on to die;
O Christ, thy triumphs now begin
o'er captive death and conquered sin.

Ride on! ride on in majesty!
The angel armies of the sky
look down with sad and wond'ring eyes
to see the approaching sacrifice.

Ride on! ride on in majesty!
Thy last and fiercest strife is nigh;
the Father on his sapphire throne
expects his own anointed Son.

Ride on! ride on in majesty!
In lowly pomp ride on to die;
bow thy meek head to mortal pain,
then take, O God, thy power, and reign.

"The Father on his sapphire throne expects his own anointed Son." For millennia, good fathers have encouraged, led, or forced their children into suffering, from primitive coming-of-age rites to chemotherapy. Even when they know it is for the best, and that all will be well in the end, the terrible suffering of the fathers is imaginable only by someone who has been in that position himself.

And mothers?

The Protestant Church doesn't talk much about Mary. The ostensible reason is to avoid what they see as the idolatry of the Catholic Church, though given the adoration heaped upon male saints and church notables by many Protestants, I'm inclined to suspect a little sexism, too. In any case, Mary is generally ignored, except for a little bit around Christmas, where she is unavoidable. 

On Wednesday I attended, for the second time in my life, a Stations of the Cross service. Besides being a very moving service as a whole, it brought my attention to the agony of Mary. Did she recall then the prophetic word of Simeon, "a sword shall pierce through your own soul also"? Did she find the image of being impaled by a sword far too mild to do justice to the searing, tearing torture of watching her firstborn son wrongly convicted, whipped, beaten, mocked, crucified, in an agony of pain and thirst, and finally abandoned to death? Did she find a tiny bit of comfort in the thought that death had at least ended the ordeal? Did she cling to the hope of what she knew in her heart about her most unusual son, that even then the story was not over? Whatever she may have believed, she could not have had the Father's knowledge, and even if she had, would that have penetrated the blinding agony of the moment?

In my head I know that the sufferings of Christ, in taking on the sins of the world, were unimaginably greater than the physical pain of injustice and crucifixion, which, awful as they are, were shared by many others in those days. But in my heart, it's the sufferings of God his Father and Mary his mother that hit home most strongly this Holy Week.

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!

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.

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.

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.

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.

From Heather tonight:

Please pray for Grace's intestines to heal. The doctor is concerned about her continued diarrhea, and so stopped all formula feeds for a few days. She's getting all her nutrition through IV. She will eat bites of things here and there, but is not really taking things by mouth either. This is expected, but the sooner we can get her back to digesting the normal way, the better.

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.

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.