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.
Grace is having surgery, with anesthesia, in Boston tomorrow (Monday). Unlike the dental work, this is an expected part of the BMT process, but "expected" does not mean "routine." Please pray for success for all procedures, and that she will come out of the anesthesia in good time. (It took her longer than usual last time).
Thank you, wonderful pray-ers.
Grace is scheduled for a CT scan and a whole bunch of dental work tomorrow (1/19).
Good news: Car damage seems minor, just a little bumper work. Praise God for that!
I've been busy/lazy about posting here, since I know many of you are follwing Grace on her own update blog, but here are some catch-up links:
Two Days of Appointments A hard two days in Boston, with some good parts. Grace doesn't think dolphins should be vegetarians. A five-hour kidney test. Being glad our personal favorite pediatric resident at Children's is friendlier than the dental resident. Children belong in cages (still working on this one). Faith the Hero Donor gets famous by proving she's more like my brother and sister-in-law than we knew.
Sunday blessings A refreshing day of prayer, worship, blessing, and sacraments.
Third Dentist... Heather takes on her winter storm namesake and emerges battered, but unbowed—though determined that no appointment is so important as to be worth dying to get there. Well, maybe except that final one at the Pearly Gates. Leukemia is really hard on teeth. And Jon's boss, his boss's boss, and the company he works for show both their own character and their trust in his.
Planned for Friday: a bunch of dental work, and a CT scan.
See this post for information on signing up for e-mail notification of new posts (though not new comments), both here and on the Daleys' blog.
You can now set up subscriptions to receive e-mail updates when there are new posts on this blog and on Daley Ponderings. Those links should work for you, but you can also find them on the right-hand panels, under "CATEGORIES".
As you know by now, you can see more update information on the Daley Ponderings blog.
They had a heavy day of testing and meetings in Boston today, and are staying overnight for another tomorrow. Also tomorrow, Faith comes to Boston for her own tests.
I know many of you pray "daily grace for Grace Daley," and we are so grateful. For those of you who like to be more specific with your praying (or just want to follow their journey), here's the schedule, if all goes as planned:
- 1/10-1/11 testing in Boston
- 1/19 CT scan at Dartmouth
- 1/22 pre-transplant surgery requiring anesthesia
- 1/30 admission to Boston, hard chemo begins
- 2/8 transplant (Faith requires anesthesia, Grace gets Faith's bone marrow through her central line.)
- Then, step-by-step, day-by-day recovery.
Grace gets a massive health check-up before her bone marrow transplant. The first two days of testing are scheduled for tomorrow and the next day in Boston. Among other things, I think they want to get baseline data so they can keep an eye on all her organ systems after transplant.
Five inches of snow so far for them today. It's supposed to change to rain.
You may have noticed that we're trying to make a way for you to subscribe to e-mail updates, but there are still a few wrinkles to be ironed out.
Heather and Jon have begin putting Grace updates on their own blog. Jon's working on a way for people to subscribe so they can be notified when new posts are up, and I will also continue linking from here and on Facebook. And probably continue to add a few notes of my own.
Here are links to the current post titles, in chronological order. You can also navigate from one to another using the buttons, e.g. "[next]" that you'll find below each post (and above the comment section).
When the Make a Wish Foundation would take you to Disney World but you have your own private amusement park.
(I'm having issues with YouTube, and I did not want this to be a "Short." But this will do. Time is short!
We finally got to see Grace herself! She was pretty sad and sore (from the mucositis) last night when she and Jon returned from what should be her final day of chemo until the BIG ONE. But soon she was back to her charming self, if a bit subdued.
Grace knows the drill with her medical affairs, and insists everything be done decently and in order. Once at the clinic the nurse was doing something with her central line, and when she was done, had to go into the hall to get a new cap for one of the lines. That meant the line was left uncapped while she walked the few steps. Grace immediately called after her, "CAP!"
The chemo is beginning to tell on Grace. (For you medical people, or those familiar with chemo side effects, she's beginning to experience mucositis, which is not fun at any age.) But Heather was able to spend several hours with her today, so that helped a lot.
And yes, we are surviving the cold, thanks for asking. They have a lovely pellet stove to snuggle up to when we need to warm up, and we're sleeping in the computer room, which gets toasty if you close the door. However, we're not taking leisurely strolls through town. Current temperature is a blamy 36F, but we're looking at a low of 15 tomorrow. No snow now, but you could (please) pray for our return flight next week, scheduled the day after a "potential winter storm." I'm okay with potential winter storms, as long as they don't materialize. :) Okay, maybe a few flakes would be fun to see, as long as they don't mess with air traffic.
UPDATE (already): I should have waited five more minutes before posting. Now I have the word directly from Heather:
I drove up this morning to take Grace to her infusion today. It was good to see her!
She is mostly doing great. (She and Jon both tested negative today.) However, she is starting to develop mucositis, which is a very common side effect of chemo. This is where the mucus membranes do not replenish themselves after sloughing off. She will not fully heal until after her immune system builds back up after transplant. Unless the Holy Spirit does a divine healing work!
Tomorrow, she will be having an EKG and an ultrasound in addition to her final chemo for this round. These things are part of the pre-transplant whole-body workup.
We are now in New Hampshire with the family. We have not yet seen Grace nor Jon, except via Skype. They are staying in a hotel near the hospital until Thursday, when she completes her current round of chemotherapy. Grace is being a real trouper, but has been sad today. I don't know how much is due to chemo, but I know she is missing her large family, and lights up whenever she sees them on Skype.
It's been so good to see everyone else, and give and receive plenty of hugs. Our thanks to all of you who prayed for our travels, which went well. (Travelling on New Year's Day morning, while truckers and crazy motorcyclists are mostly still nursing their hangovers, is almost pleasant.)
The main thing now is to keep everyone healthy—which in a very busy, very large household during a New Hampshire winter may be a God-sized miracle in itself.