Lift Up Your Hearts!

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.

Directly from Heather:

Grace had her last dose of remdesivir and her first dose of second round azacytadine today (with anti nausea meds also.)

Then she and Jon are spending the night at home! We ate dinner all together as a family, and the siblings are having fun reading to her and playing with her. She is such sunshine in our lives.

They will go back up tomorrow for more chemo, and then stay at the wonderful David's House for the next few days as she finishes this round.

Continued thanks for continued prayers.

Jon and Grace are staying at a hotel near the hospital, to save some of the long daily drives back and forth. Heather wrote a quick update and is enjoying having some time with the other kids, who have of necessity not had their normal share of mommy time lately (not to mention Grace time).

Jon and Grace are waiting in their hotel for the hospital to have a bed open. She seemed to handle her remdesivir just fine yesterday, though she (maybe coincidentally) had a giant diaper that leaked all over everywhere and Jon had to call in a nurse to help clean it up. (Since then, it's been normal.)

The boys read her stories over zoom this morning.

Oh, Jon is now congested. We didn't think to send a COVID test up with them, so he bought one, but I haven't heard the results.

We have a new tentative schedule. Testing Jan 10-11. (Faith will go in for her stuff one of those days.) CAT scan at Dartmouth 1/18 or 19. Bone marrow aspirate (final check) 1/22. Admission 1/30, transplant 2/8. 

Subject to change, of course, but that's the schedule as of now.

Grace was supposed to start her second round of chemo today, but at the Daleys' request they agreed to postpone the first dose till Sunday, to give her time to get over covid, which she seems to be doing just fine on her own. Unfortunately, they will be giving her remdesivir, which I am not happy about—hey, it's my blog, so you will still occasionally get my opinions—but cancer and a compromised immune system put you in a difficult position when it comes to treatment choices. Sometimes you have to pick your battles. This, by the way, is in Dartmouth, not Boston. Boston looks to have been postponed by a couple of weeks, though that's still tentative and subject to whatever else happens.

From Heather:

Jon just called from Dartmouth. They have agreed to postpone the azacytadine (chemo) until Sunday. Grace is starting on remdesivir (infusion over two hours per Jon's request after his research) today, and will repeat for the next two days. So Sunday, she will be getting both, but not at the same time, so it will make for a long day. Jon will be getting a hotel for Grace and himself so he does not have to drive back and forth so much after long days of medicines. We may switch off, or they may come home for a night or so. That part is up in the air.

Thank you very much for your prayers for the doctors to listen to his concerns.

This will also be the longest Grace and I have been apart. Right now she's quite fine, and she's done single overnights before when she was in the hospital, but it will be interesting to see how she handles it. We might make visits more frequent depending on how that goes. 

Just as I was crawling into bed, already late, I received an e-mail that made me turn to Facebook where I knew there were pray-ers still awake. There's a reason some of us are morning people and some are night people! This is what I wrote:

To those still awake: emergency prayer for Grace, please. She has a fever, as she did the first time she had covid, but now a fever requires a trip to the ER for tests and antibiotics, a 40-minute drive, and the day started early and has been very stressful and they are so tired.... Pray for safe driving as well. If they get home tonight it will be very late. It already is very late. Thank you.

I was so gratified by the response from our night-owl friends.

I woke up at 3:45 in the morning. There are some advantages to getting older. I wouldn't have put middle-of-the-night bathroom runs as one of them, but in this case I was able to get the e-mail telling me that they had made it safely home at 3:30 a.m.

I knew better than to expect anything more when I woke up in the morning, and waited for an update while hoping they were getting some sleep.

Wouldn't you know, shortly after I posted to Facebook that I didn't know any more than that they were home, look what came:

They got home at 3:30am. Her bloodwork looks pretty good, her fever went down without meds, they gave her antibiotics anyway just to be sure.

She and Jon are heading to Dartmouth soon. Pray for their conversation as he is going to try to get them to wait on the chemo a few days so that she can fight off the COVID first.

Grace is doing well. Stuffy, but eating like her usual monster self. (:

Prayers for us would be appreciated, too, as we are going up there for a short visit, and that's a bit more complicated than usual, obviously. Please pray for safe travels, that our visit will be a blessing, and that we neither give nor receive any illnesses!

What's worse, having no information or having the wrong information?

Today Grace was supposed to have a battery of tests in Boston, so she and Jon left home early this morning. (Heather couldn't go because she was still in the "stay away" window of the hospital's understandably restrictive Covid rules.) But this morning, someone—I don't know where; the rules are different depending on the facility—decided at the last minute that Grace shouldn't come, either. They e-mailed Jon to tell him they had cancelled all her appointments—but not until he and Grace were already on the road; he found out when they were turned away at the reception desk. So that was a three-hour plus trip wasted. :( And more than that—something about hotel cancellations, but that wasn't clear to me. 

That's a good reminder to keep in mind that I am doing my best to provide accurate information here, but it's second-, third-, or sometimes even fourth-hand, so take it for what it is. I'll publish any corrections if and when I get better data.

Anyway, stress levels are high today.

The HLA test results are finally in, and Grace's fifteen-year-old sister is a perfect match! One more entry in the list of why having a large family is great. :) Looking at the results makes me want to learn all the more about genetic genealogy.

Also, I learned that even though you can't get on the bone marrow donor registry if you're under 18, the ideal donor is under 10, and 10-20 is also great. So something else must be keeping children off the registry, something that must not apply to family members.

Grace and her sister will have to undergo a series of rigorous health tests, and that was supposed to start today. However...(see above). It turns out that maybe it wasn't such a bad idea to cancel the appointments, as later today Grace herself tested positive for Covid.

Despite that, she starts another round of low-dose, maintenance chemo tomorrow. That's only an hour's drive away instead of 1.5, but it's a long appointment and a major chunk out of the day, and no doubt plays havoc with Covid-recovery for the drivers. The doctors are also talking about giving Grace some other drug or drugs to combat the Covid, so that's another prayer request: wisdom for the doctors and also for Jon and Heather. Being immuno-compromised, does Grace really need more medications, with risky side effects, when her body's already being assaulted by two or three different illnesses and deliberately-toxic drugs? Truly, medicine is as much art as science. So far, she's taking Covid in stride, as she is everything else.

We are most grateful for your prayers and well-wishes.

If I'm not careful, this will devolve into an excuse to talk about how cute our grandchildren are. I'll try to keep information flowing at the same time.

Information is the hard thing. Waiting for test results, and scheduling, and dealing with monkey wrenches like Covid means that there are too many unknowns in these equations. Oh, and all this is happening around a major holiday, when people take days off to travel and to be with their own families! Plus, although they are working together, Boston Children's and Dana-Farber are separate entities at some level, and have different rules that need to be reconciled when scheduling appointments.

The start date for the transplant process had finally firmed up as January 8, then had to be postponed because of Covid rules. We don't know till when, hopefully just a short time.

Which brings me to a major prayer request: health for all. That Covid will finish its course quickly and not run sequentially through the whole family. That we will not bring any significant Florida germs when we go up there, and that our arrival will not be the signal for Covid or any other illness to infect us. There are of course much more serious prayer needs coming up, but the process can't happen until it gets started! Also, the delay means they will have to do another round of maintenance chemo in New Hampshire, which is time-consuming as well as stressful.

Not all delays are necessarily bad. As a friend said, quoting her own mother, "One may never know what God is keeping us from."

Yesterday we watched Grace getting her central line flushed. She knows the drill, and will often herself get the box with all the equipment and supplies. She is patient and calm while the procedure is being done—being too busy wiping down her own doll with an alcohol wipe to pay much attention to what else is happening.

It was so heart-warming—and heartbreaking—to see Grace over Skype yesterday. She looked so good, so happy. So healthy, even.

Who wouldn't be happy? She can eat anything she wants! For most of her life she has been under severe dietary restrictions that were the doctors' best guesses as the cure for her problems.

Hurray! I have leukemia! Now I can eat milk, and cheese, and eggs, and wheat, and soy, and nuts, and even garlic! All those tempting foods that my siblings couldn't share with me are now mine! Hurray! I have leukemia!

The family had an unexpectedly quiet(er) day since Covid made them join their extended family celebration via Zoom. It turns out that Christmas Covid was delivered to several of our Northeastern families—in three different states. Clearly, the TSA should have done a better job of checking Santa's sleigh.

Grace delighted in showing us all the wonderful foods she was scarfing down with glee. Eggs! Cheese! Orange juice!

She also joyfully demonstrated that she has learned to sign, "I love you." (The one-handed version, which we often use in our communications.)

A lesson for us all: When you face a troublesome and even terrifying future, approach it like a child: Trust those who care for you, share your love, and enjoy good meals!

Grace's bone marrow transplant process is moving forward.  They're still awaiting some further test results, but it looks as if Grace's oldest sister, Faith, is a perfect match for her.  If you know how close Faith and Grace have always been, that will seem "meet and right" to you.  Still to come are a whole slew of other tests for Faith, to make sure that she, herself, is as healthy as can be.

All going well, the "conditioning" process should begin the second week of January.  That will be to hit Grace's tiny body with three separate forms of wickedly toxic drugs, designed to completely destroy her own bone marrow and all the cancer cells in her body -- and her entire immune system in the progess.  After about nine days, she will then receive Faith's bone marrow, which all going well will migrate to Grace's bones and begin the process of "engraftment" of Faith's cells and the building up of a new immune system.

There is, however, a new complication:  Several members of the family have come down with Covid.

Please pray:

• That those sick will recover quickly and no one else get ill.
• Protection for Grace, whose immune system has already been somewhat compromised by her recent chemo.
• Protection for their unborn baby (Mom Heather is one of the ones who tested postive).
• That this will not set back the transplant process any more than necessary.

God knows best, even when we would have things otherwise.

I'll have more to say later about the situation, how we got here, and where we're headed, but for now, this is the 30,000-foot overview of how our lives were turned upside down in an instant.  This post is actually a week old, but while we're working on getting something more official set up, I want to start getting the word out here.  Things are happening.

Grace Victoria Daley is our two-year-old granddaughter, who lives in New Hampshire with her parents, her four brothers, and her two sisters, ages 8 through 20.  Another sibling is expected in May! Grace was recently diagnosed with NF1 (neurofibromatosis type 1) and JMML (juvenile myelomonocytic leukemia), caused by a very rare genetic mutation.

Grace is one in a million. Literally. There are about 1.2 cases of JMML diagnosed per year; it accounts for only 1% of all pediatric leukemias. There has been a lot of progress made over the years in treating pediatric leukemias; unfortunately, JMML is not one of those about which we can feel very confident.  The best option Grace has is allogeneic hematopoietic cell transplantation (bone marrow transplant).

Grace has already received seven chemotherapy treatments; these are not curative, but have already relieved her symptoms so much that she is probably feeling better than she has in months, and has a ravenous appetite.

In truth, The Battle Belongs to the Lord, but recruitment for the Prayer Support Army is in full swing.

We’re working on putting Grace's story and updates on Daley Ponderings, which is about to become a lot more active than it has been in a while.

Grace will receive her transplant at Dana Farber/Boston Children's Cancer and Blood Disorders Center.  The family had their first meeting with the team today, and are no doubt processing a whole lot of overwhelming information.  I expect to have an update to share within a few days.   [Actually, the appointment was December 13; I'm trying to catch up here.]

In the meantime, here are a few prayer requests:

• Wisdom for the whole team, as they put together the right treatment program for Grace.
• Finding the right donor (with all those siblings, the doctors are optimistic, but they need wisdom for making the choice).
• That the team will be a great match for the family, with mutual trust, understanding, and compassion.
• Of course they want to do whatever gives Grace the best possible chance, but the family really hopes that things won’t move too fast, so that they will be allowed a peaceful Christmas at home as a family before heading into the upcoming ordeal.  (Once the transplant process begins, part of the family will have to relocate temporarily to Boston.  Fortunately, it is only about an hour and a half away by car.)
• Prayers, too, please, for the rest of the family, who are feeling the strain.  They have great help, but it’s hard.  As Heather (our daughter) put it, “Grace is doing great. The rest of us (older than 10) are the ones who are stressed and tired.  Trying to get lots of cuddles in, and plenty of tasks are being left undone.  But we are trying to take it one day at a time.”
• Grace's sister, Joy, is making a list of all those she knows of who are praying for their family.  If you would like to add your name, please either say so in a comment, or e-mail me here.  Partial names, nicknames, or initials are fine, if you don't want to be clearly identified.

I know how much we all have to pray for, and how much easier it is if we have photos and updates to inspire us.  Many people have enjoyed this picture of “Bacon Girl,” taken in the hospital.  So, please, whenever you eat bacon, smell bacon, or think of bacon—say a prayer for Grace and her family!  (Feel free to substitute the comfort food of your choice if you don’t eat bacon.)

It is said that someone once asked Martin Luther, "Why do you preach salvation by faith alone, week after week after week?"

"Because," Luther replied, "You forget it week after week after week."

In that spirit, it's time to bring back once again this much-needed, and clearly forgotten, scene from A Man for All Seasons.