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.

Posted by sursumcorda on Thursday, February 1, 2024 at 4:56 pm | Edit
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How do I get one of those T-shirts fro David’s house?



Posted by Janet Colburn on Thursday, February 01, 2024 at 5:15 pm

Here's the link to Heather's post about it, with instructions: https://jon.limedaley.com/plog/post/team-victory. Thank you; it will be cool to see you in one of the shirts. I chose Jade Dome (weird name, but pretty), and Porter chose Royal Blue.



Posted by SursumCorda on Thursday, February 01, 2024 at 5:37 pm

Was hoping to go visit tomorrow, but unfortunately have a non-COVID cold. I'm on backup/sick call this weekend (ironic when I'm also sick...) so if I do get called in, will at least do a masked wave from the door! :)



Posted by Layla on Thursday, February 01, 2024 at 5:54 pm

Answer to prayer: Grace passed the test. She's now free to play in the Play Room.



Posted by SursumCorda on Friday, February 02, 2024 at 4:37 pm

Layla, I figure being a pediatrician is as bad as being a teacher when it comes to germ exposure! Maybe worse, since you know your kids are sick (if not always contagious).



Posted by SursumCorda on Saturday, February 03, 2024 at 7:04 am
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