Lift Up Your Hearts!

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.

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.

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.