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Some pretty good appointments yesterday, and the snow (9 inches?!) wasn't too bad at all driving up to Dartmouth (one car sped by our line of traffic and a couple minutes later was spun off the road in the median, but she was already out of the car and on the phone, so presumably was fine, but... (More)
Posted by jondaley on December 3, 2025, 10:38 am
Category: Grace
Grace is getting an MRI, and ECG, and bloodwork (including thyroid) tomorrow morning at Dartmouth.  I'm not sure how much the thyroid medicine is working, so we'll see what the numbers say.  Her skin is very dry and she has rashes in places, and also the dryness is itchy so she... (More)
Posted by joyful on November 10, 2025, 8:56 pm
Category: Grace
Jon just put this comment on a recent post, but I don't think most people get notified of comments, so I'm posting it here: She's getting an echocardiogram right now [July 9, 2025, 8:42am] , and then an MRI, regular oncology checkup, opthamology and audiology. We don't expect too much... (More)
Posted by joyful on July 9, 2025, 8:47 am
Category: Grace
Short version of the post - all good results!  You can read the longer version below. We are very happy and it has been a weight off of us.  Until a couple days ago, it was seeming like it was quite likely going to be a bad answer, as we've been praying and thinking over... (More)
Posted by jondaley on June 20, 2025, 2:35 pm
Category: Faith, Grace
Jon was reading through Grace's test results and saw that the most recent bone marrow report mentioned the JAK3 mutation. He contacted her doctors because we thought that one was gone following the transplant. Dartmouth doctors can't see her Boston results to compare  so they contacted... (More)
Posted by joyful on June 5, 2025, 5:08 am
Category: Grace
Our week has been somewhat full, with a few extra church services, including Maundy Thursday with handbells, which I didn't find out until the end of the service that it wasn't recorded, and I meant to record it during rehearsal, but I forgot.  But, it went well, despite Jeremiah being... (More)
Posted by jondaley on April 18, 2025, 9:57 pm
Category: General, Joy, Grace
We had our appointment with the NF1/oncology doctor yesterday. It turns out the neurofibroma is even bigger than we thought. In addition to what we already knew, which is that it goes from her external ear where we can see into her middle ear, it also extends down under her ear into her parotid... (More)
Posted by joyful on April 10, 2025, 12:31 pm
Category: Grace
I get daily emails from GodTube.com, and they are often worth reading.  Today's devotional  was good. While I don't ever feel (well, not since just after the bone marrow transplant) that "life is over", it is sometimes hard to think about what Grace's life will be like, and the... (More)
Posted by jondaley on March 6, 2025, 10:58 am
Category: Grace
As previously mentioned, Heather noticed a spot in Grace's ear last summer, and when the NF1 doctors heard about it, they were concerned that it might be a plexiform neurofibroma , and so scheduled an MRI for today to take a closer look. While it has shrunk on the surface, it is still there... (More)
Posted by jondaley on February 12, 2025, 5:57 pm
Category: Grace
I had to go calculate the day since we no longer count the days like that any more - it has been great to have less medical stuff going on these days, and we get more comments about her being "so cute" in the grocery stores and the soccer games, etc. Her hair is growing in, and I don't think... (More)
Posted by jondaley on September 30, 2024, 10:15 am
Category: Grace
We were so relieved and happy to have Jon and Grace with us for Family Camp. Daley summer life has been super full as usual.  Jon got special permission for Grace to ride the Summerfest carousel all by herself (and he wiped the horse down with hospital disinfectant wipes.)... (More)
Posted by joyful on July 26, 2024, 4:30 pm
Category: Grace
Heather is better at writing the updates than I am, though I've been intending to write a few since we've been back in the hospital. She has been doing quite well the last few days and much more cheery.  Nothing like a colonoscopy to cheer you up I guess.  I hadn't been paying... (More)
Posted by jondaley on July 1, 2024, 10:21 pm
Category: Grace
Screenshot of a video call on Thursday:  Friday's procedures went well. They got plenty of marrow for their tests. The endoscopy showed the esophagus healthy. The sigmoidoscopy showed her colon quite inflamed. The surgeon could not tell the cause, but was confident that the... (More)
Posted by joyful on June 30, 2024, 6:41 am
Category: Jonathan, Faith, Joy, Nathaniel, Grace
Today, Boston called to say they'd like to observe Grace over the weekend and to prepare for admission on Friday. They will likely do a colonoscopy and maybe even an endoscopy. (And Dartmouth suggested they get some bone marrow while she's sedated.) She threw up her NG tube this morning and so... (More)
Posted by joyful on June 25, 2024, 6:20 pm
Category: Grace
We went back to the clinic in the late morning after Grace threw up her NG tube.  She did manage to take her meds by mouth that morning, but she doesn't really like it.  They had tested her stool when she had so much diarrhea at her appointment the day before and it did come back... (More)
Posted by joyful on April 3, 2024, 8:44 pm
Category: Grace
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