Lift Up Your Hearts!

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.)