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.
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.
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.
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!
- 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.
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.
After still more testing, Grace was officially cleared for transplant yesterday. That is a good thing, even though it does feel rather like telling a Navy pilot, "You're cleared for take-off on the most dangerous mission of your life."
She was admitted to Boston Children's Hospital, and her room is a tangible answer to your prayers and hopes, much better than they had been led to believe, and the nurse made it even nicer.
The parent bed is big and serves as a nice couch for daytime. There is a huge windowsill. The nurse snagged us a recliner chair to replace the regular chair. Four small drawers under the parent bed, a cabinet/wardrobe, a little fridge. Reasonable sized bathroom with shower.
Children are so adaptable. I was afraid that being required to sleep in a cage (crib) would be adding unnecessary insult to injury for someone who has never been confined (except in her car seat), but so far she thinks it's fun. The parent bed provides a good place to play when not sleeping, and the crib provides a safe place for her during the times Heather and Jon must have their attention elsewhere. Hospitals are not the best places for children to be free-range!
We lost the battle about Grace having to sleep in a crib, but it is a fancy hospital bed crib, and she thinks it's funny for me to open the little end door and then she closes it, over and over. She spent most of her awake time out of it.
At six o'clock this morning, Grace slept peacefully through her first dose of the hard chemo. The battle begins.
As Heather said in their own update post,
Lots of emotions yesterday, but I feel ready and supported. It is so very hard to think about the nature of leukemia and chemotherapy and side-effects and medicine. But it is so very good to have all the prayers and thoughts and practical support. God is our strength and very present help in times of trouble.
As I child, I loved to climb in the beautiful Adirondack Mountains of Upstate New York. Sometimes we had to hike quite a bit to get to the base of the mountain, a walk with its own ups and downs that seemed like mountains to my seven-year-old legs. Eventually we'd arrive at the place where the trail began to go up the mountain itself, taking me to places that would test my strength, endurance, and determination. It was probably a good thing that I couldn't see much of what was ahead of us, but learned to take one step at a time.
The Daleys have hiked the trail and have set their faces to the mountain. Tomorrow (1/30) they make the move to Boston for an undetermined length of time. They have an apartment a couple of blocks from the hospital to use as a home base when they are not at the hospital or dealing with things back home. If Grace and Faith get final clearance after some more testing, the transplant team will begin assaulting Grace's little body with three separate, vicious chemotherapy drugs, with the intent of killing off all of her own bone marrow, in preparation for receiving Faith's donation.
The transplant itself is scheduled for February 8. And then begins the process of engraftment, as Faith's cells make their way from Grace's blood to her bones, to begin building up her new immune system. In the meantime, the team will be keeping a close eye on her health, because not having a functioning immune system is not a good place to be. And even though graft-versus-host disease is less of a concern with a match as good as the one between Grace and Faith, I'm sure it's still something they have to watch out for.
Sometimes a snowstorm can feel like a hug. Here's what Heather wrote this morning:
Today is our last day all together as a family for a while. God blessed it by sending a beautiful six inches of snow that cancelled our outside activities for the day. We plan on spending it cuddling and playing games (and packing for Boston).
Prayers for this week:
- We got a visiting nurse for Grace's dressing change instead of having to drive to Boston this weekend.
- Snow Day!
- Grace's bone marrow aspirate gave results that made the doctors happy (though I don't really understand the details). The bottom line is that it means she is in a good position for transplant.
- That the chemo will do its job to wipe out Grace's bone marrow entirely while giving her minimal side effects.
- That we will have good communication with the doctors and they will have good communication with each other.
- That the other kids will be sustained and at peace while they have to be separated from their parents and sister.
- Mental health for all of us as we deal with all the hard things surrounding these circumstances.
Thank you all so much for your support and prayers. We can feel it!
And here's an additional prayer request from Grandma:
- For the health and safety of Baby Daley, who must go to Boston with them. Heather needs to be there for Grace while at the same time avoiding exposure to the chemo drugs.
Those of you following the Daleys' posts know this already, but here are some recent updates. Keeping up while on a Caribbean cruise is not easy, even though Elon Musk made it much easier than in previous years. Thanks to StarLink satellites—the launches of which we love to watch from our front yard—we had a great internet connection. The connection, for once, was not the problem—time in the schedule to use it was another story.
Her Smile Is Still Cute The sad but cute results of the dreaded dental work, though none that I know of from her CT scan.
Fertility Preservation The amazing thing they did during Monday's surgery in Boston, and proof that Heather is still an engineer (some might say a nerd).
Team Victory! Her sister Joy designed this t-shirt for Grace's support team, and they decided to use it as a fundraiser for David's House, which has been such a balm during their trials at Dartmouth. Details available in the post.