Lift Up Your Hearts!

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.

If you ordered a Team Victory t-shirt, they are now in.  See this link for details.

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!

Prayer requests:

• 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:

Praises:

• 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.

Requests:

• 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.

Anyway:

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.

I can't resist this picture of Grace at dinner last night.

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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.

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