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.)

Posted by sursumcorda on Friday, December 22, 2023 at 7:49 pm | Edit
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I put it on the Facebook post, but I'll also say it here - please put me on the list of people praying. (people praying ought to be "prayers", but that doesn't work. Any thoughts on the right word?)

Posted by Kathy Lewis on Saturday, December 23, 2023 at 2:05 pm

Thank you! I usually spell it "pray-ers."

Posted by SursumCorda on Saturday, December 23, 2023 at 2:27 pm

That works.

Posted by Kathy Lewis on Saturday, December 23, 2023 at 7:47 pm

Please put me on the list for prayers.

Posted by Janet on Monday, December 25, 2023 at 9:06 am

The Tomans are praying!

Posted by Serina on Wednesday, December 27, 2023 at 12:47 pm
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