Search Results: work

Holy Week
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
Plexiform
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
One year home; biopsy results
One year ago today, our older kids got to see a total solar eclipse, and Grace came home! These annual milestones are flying by this year, and we are thankful.  Grace's NF1/oncology doctor called Jon with biopsy results on Friday. It is the opposite of what we were hoping. Both biopsies... (More)
Posted by joyful on April 8, 2025, 4:23 pm
Category: Grace
More Time For Praying
Grace had several appointments at Dartmouth today: audiology, ENT, oncology/nf1, lab draw This is my memory's summary of Jon's report to me: A lot of time for not a lot of progress.  Education/information, but no decisions. The ENT was not experienced, so they want her to see the adult... (More)
Posted by joyful on March 4, 2025, 7:40 pm
Category: Grace
MRI Scan
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
One Year Transplant Anniversary!
Today is Day +365. One year ago, this is where we were: Today, Faith is recovered enough to participate in On Belay's Teen Winter Outdoor Adventure (pictures may come later, since she is there as I type.) Grace had her first post-chemo haircut (just bangs) the other day.... (More)
Posted by joyful on February 8, 2025, 9:56 am
Category: Faith, Grace
Thanksgiving for Grace
Sorry we left you hanging about Grace's recent appointments. Here are some things to be thankful for about Grace. She did really well during her audiology appointment. It took a long time, but she followed all the directions and was cooperative as usual. She does still have some hearing loss in... (More)
Posted by joyful on November 25, 2024, 6:59 am
Category: Grace
Where is Elbereth?
Last weekend, Heather took all of the girls on a retreat and had a lot of fun together.  Those of us at home had a work day at Grammy's and another friend's house and then had a really great day at home with a friend from church.  Elbereth, Jonathan's snake, was out and various people... (More)
Posted by jondaley on November 12, 2024, 5:18 pm
Category: Jonathan
NF1 Appointment
The appointment with the NF1 doctor went well. One of her oncology doctors was also there, the one who works closely in the NF1 world. Jon didn't remember meeting the NF1 doctor, but it was right at the very beginning, during Grace's first hospital stay, when she was diagnosed. So, much to be... (More)
Posted by joyful on November 6, 2024, 6:17 am
Category: Grace
Birthday surprise
Grace has had a fun birthday overall, with balloons and presents and blowing out the candles. But tonight, during her line flush, the white side busted a hole through, up above the clamp, near the Y . We did our best with a paper clip clamp, but Jon took Grace to the fire station... (More)
Posted by joyful on October 24, 2024, 10:15 pm
Category: Grace
Day +235
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
Update - Sorry!
So sorry I left you hanging.  Grace and I went back to Dartmouth the next Friday.  They did her bloodwork and the creatinine was just fine, so they were reassured and sent us home without further testing.  She has been doing well. Faith has had two soccer games now, and is also... (More)
Posted by joyful on September 1, 2024, 6:56 am
Category: Faith, Grace
Day +196: Long Clinic Visit, Kidneys?
Jon and Grace just got back from a very long clinic visit at Darmouth.  Jon did not have time to tell me much, since he had to catch up on work. Grace's creatinine level was high, so they are concerned about her kidney function.  They double-checked that number and it was still... (More)
Posted by joyful on August 21, 2024, 5:19 pm
Category: Faith, Grace
Day +170 Update
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
Day +146: Discharge Today!
Grace is all set to leave in a few hours - just waiting on paperwork. Her potassium is a little high, but they had taken off her potassium-lowering drug, and she has been eating 4-5 bananas a day, so they expect she will be fine once she goes back on her regular meds and has more choices of... (More)
Posted by jondaley on July 3, 2024, 9:28 am
Category: Grace
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