Lift Up Your Hearts!

It has been blessedly quiet on the Grace front for a while, giving the family a chance to focus on Hope, her new little sister. No news has been great news, with Grace being weaned off the cyclosporin, laughing, smiling, playing, growing hair, and generally enjoying life despite the remaining presence of her nasogastric tube and central lines.

But now we're back with another prayer request. In Heather's words,

Grace has been having belly pain and a lot of mucous in her stool, often with blood as well. We have taken her off cow's milk again (she had been asking for it instead of almond milk.) We haven't seen much improvement in the last week, and she does complain that her belly hurts and she also has a diaper rash. There is the possibility that this is GVHD (graft vs. host disease) and for the moment we have stopped weaning her cyclosporine. We are waiting for her Dartmouth team to communicate with her Boston team to see what to do.

Please pray for complete gut healing, normal stools, and normal appetite. And wisdom and peace.

Thank you all.

The chimerism results from Grace's most recent bone marrow aspiration are in:  >97%!

I've seen chimerism results of 100%, but with this particular laboratory the best you can do is >97%.  Sort of the way the highest grade on a number of educational standardized tests is 99%.  So it's great news!

Hope is doing great, nursing and sleeping well.  Heather, too, feels well and actually (to her mother's eyes, anyway) looks more rested than she did in the last month of pregnancy.

On Wednesday, Jon and Grace will go to Boston, so she can have her post-day-100 bone marrow aspirate. Prayers will be much appreciated!

Grace appears to be doing very, very well. We do video chats, and it's wonderful to see her smiling, hear her laughing, and observe as her language blossoms.

The BMA is an important test, to give a picture of what's going on under the surface. Plus, it involves anesthesia, which is always a special concern. Last time they had to poke her twice to get enough sample, so we're praying that they can do it with just one this time.

Thank you all!

UPDATE 6/6/24 Grace made it through the procedure well, though that's all I know at this point.  Boston isn't the best at sharing results, seeming to prefer the "no news is good news" approach.  Chimerism results come much later, anyway.

Hope Serena Daley
Born Friday, May 31, 2024, 6:50 p.m.
Weight: 9 pounds, 11 ounces
Length: 22 inches

Hope was born at home, 17 minutes after the family's midwife arrived. Her timing was amazing; she made her appearance at the exact time her oldest brothers had planned to leave for their orchestra concert. Needless to say, they hung around a little longer. But they made it in good time, and it was an excellent concert—we watched the livestream. Too bad the audience was slightly reduced, but Hope can be forgiven for stealing the show at home.

Grace, the proud big sister.

Twenty-three hours later: Hope and Joy.

I am brazenly stealing Heather's post; I can't say it better.

This is the day the doctors consider the transplant to be successful. 

This doesn't mean that she's not still at risk for a bunch of things. But it does mean that Faith's cells are firmly established in her system and doing their job!

The long-anticipated Day +100 is rapidly approaching, but Grace managed to make it more exciting by picking up her first post-transplant cold. Turns out it is just a simple cold, but in her situation a runny nose and mild fever sent her on her first unscheduled return to the hospital post-transplant. There are so many things more serious than a cold that they have to check for, and they need to observe her closely to make sure her body is handling the challenge well.

I worried that she might fear the prison doors were closing around her again, but she took it well, and was very happy to beat her dad in Chutes and Ladders twice in a row. (Does anyone besides me remember that the game was once called Snakes and Ladders?)

Here's the short story version from Heather:

Overall, things have been going well, Grace's numbers coming back satisfactorily.

But then she got a cold. Just runny nose and sneezing. But after her nap, she had a mild fever. Boston wanted us to take her to Dartmouth, but Dartmouth said that if her fever went up, they'd be transferring her to Boston. So Jon decided to take her straight to Boston. (That was Tuesday night.)

They did a plethora of tests and the only positive was rhinovirus. But they wanted to keep an eye out on her for at least 24 hours, so they admitted her. She did get blood overnight, but everything else is looking good. Jon is hoping to come home tomorrow afternoon. She did some painting and lots of games with Daddy. He went over to the Dana Farber resource room to get her more books, since I had only packed her a few.

This is a really short version to get the word out and still get myself to bed relatively on time. Please keep up the prayers. Day +100 is just around the corner, and Jon discussed with the doctors the weaning process for the immunosuppressant drug.

I'm so very thankful that our family has not had any sickness from the time we had COVID at Christmas until now. Please pray that general trend continues and we keep sickness (and hospital visits) away.

Here's a really cool thing about the timing: Our nephew's wife (niece-in-law?), the one who's a pediatrician at Boston Children's, happened to be on duty in the Emergency Room Tuesday night!

You like Pirates of the Caribbean? You especially like the music? I think you'll enjoy this 13-minute story of the soundtrack.

Having shared that, I can't resist reprising my personal favorite version of the Pirates themes. For all of our Grace fans, this is her primary support group; Grace is in the backpack, contributing to the percussion by dropping a French horn mouthpiece, twice. (Summer 2023)

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....

For those of you waiting to hear about Grace's return to her home in New Hampshire after more than two months of exile in Boston, I'll quote Heather's post in its entirety (emphasis mine).

Happy, Happy, Happy!

Grace sings this little Happy song at least once a day. She sang it in the hallway as we were leaving the apartment to go home. I have not yet managed to get a video of her singing it.

Everybody is doing better now that we're all together.

It's good to be home; it's good to not have to try to get a bunch of stuff done before leaving again. We are still adjusting to the routine, and still unpacking, but the overall feeling is good.

There is a lot of laughter in the house with Grace around. She is such a blessing.

Please continue to pray for her complete healing and protection from germs.

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.