Search Results: wednesday

Prayer and fasting Wednesday
The day of prayer and fasting for Grace has been scheduled for this Wednesday, June 11, 2025. Please observe this in the way that seems best to you. Jon and Grace will be at the Hillsboro Methodist Church ( 16 Henniker Street, Hillsboro, NH 03244 ) from 11AM - 6PM. Pray for complete... (More)
Posted by joyful on June 9, 2025, 2:00 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
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
NG tube out!
Grace has been enjoying walking in the snow and climbing on the plowed parts.      On Wednesday, December 11, 2024, we took her NG tube out on purpose! She had been eating and drinking well, and we trialed no formula for six days. She still gained 0.2 pounds. Now she... (More)
Posted by joyful on December 14, 2024, 2:58 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
Day +144: GVHD
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
Bone marrow aspirate Wednesday
Jon and Grace are heading to Boston on Wednesday for her post-day-100 bone marrow aspirate. Prayers appreciated! (More)
Posted by joyful on June 3, 2024, 6:18 pm
Category: Grace
Day +27
Grace had a great day today, despite staying up until after midnight (I went to sleep, but I asked the nurse in the morning, and she stayed up reading her new book and trying to not let the nurses check her oxygen levels since that would involve taking away her light...) She came to rounds in... (More)
Posted by jondaley on March 6, 2024, 11:34 pm
Category: Grace
Catchup the last few days
The last long update ended February 3 in the evening. In the wee hours of February 4 (Sunday) she got a blood transfusion for her hemoglobin level, which was expected. (They’re killing off her bone marrow, so her own body is not making as much blood.) Sunday morning, she got a dressing... (More)
Posted by joyful on February 7, 2024, 7:51 am
Category: Grace
Days -8 and -7
T-minus seven days and counting. Transplant Day is Day 0 and they count all other days from that. Yesterday, I left off while Grace was still sleeping. She woke up slightly grumpy, but soon was fully awake and her normal self. Chemo every six hours, blood draws every half hour (!) plus... (More)
Posted by joyful on February 1, 2024, 2:21 pm
Category: Grace
Leukemia
The only known curative therapy for JMML is a bone marrow transplant, so we will be going down to the Boston Children's Hospital/Dana-Farber Cancer Institute . Their team is one of the leading cancer centers for treating JMML. We had our first visit on December 12, and are still processing... (More)
Posted by joyful on January 8, 2024, 2:38 pm
Category: Grace
Grace: Two Years of Unexplained Medical Issues
(this was written January 2024, referring to Grace's first two years of life) When Grace was about six weeks old, right at the beginning of December 2021 , I noticed that she had “ café au lait spots .” I looked it up on the internet, and discovered that these... (More)
Posted by joyful on January 8, 2024, 2:33 pm
Category: Grace
Serving vs. Selfishness
I think I have found a key to living selflessly.  When there's an emergency, it's easy to serve.  I see the great need, and I know it's temporary.  It's hard to keep serving in the ordinary, mundane, because it feels like it will never end and the needs don't always seem so great.... (More)
Posted by joyful on January 24, 2014, 9:42 pm
Category: General
Pocket Notes
Faith had a blast at Star Island with Grammy and Papa. 7/25 - JDD, explaining why he likes to use a certain spoon for his breakfast cereal, "That spoon is special to me, because Grammy gave it to me for Christmas last year." 7/28 or 29 - Joy had a cold and I gave her 1 or 2 nebulizer... (More)
Posted by joyful on September 14, 2013, 11:30 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
Jeremiah's Birth Story
My due date was February 21. Jonathan, Noah, and Faith had all been exactly five days late. Joy was early, but we weren't sure of her date and the more we thought about it the more we figured she probably had been late as well. So we had Linda and Porter schedule their flight to arrive... (More)
Posted by joyful on February 24, 2013, 5:55 pm
Category: Jeremiah
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