Search Results: love

Isaac's 23rd birthday
23 years ago, we started this blog to have a good way to keep everyone informed of how things were going. In some ways, it really does feel like a lifetime ago.  However, Isaac is still close in our hearts.  His life and death are a part of our family and influence our relationships to... (More)
Posted by joyful on November 21, 2025, 8:37 am
Category: Isaac
Day +571
Well, I didn't manage to post this yesterday when the day was a nice round, even number, so I get to post it today when it's a prime number! This has been a full summer for us. Noah was home. Grace got to ride at Summerfest just like all the other healthy children! She had... (More)
Posted by joyful on September 1, 2025, 6:15 am
Category: Grace
Sailing Trip!
Jeremiah and I will be with Heather's first cousin once removed and sailing from Florida to Connecticut starting tomorrow. We've thought about going in prior years, but the schedule never quite worked out, but this year we decided we would jump in; we don't really know what to expect, but... (More)
Posted by jondaley on July 16, 2025, 4:27 am
Category: Jeremiah
Day +500
Today is Day +500 and we have much to rejoice over! We are so thankful for Grace's good marrow results, so thankful to reach this milestone. I feel so much lighter now, and the smaller things that bothered me last week don't seem so bad anymore. Here are some recent pictures and quotes... (More)
Posted by joyful on June 22, 2025, 9:49 pm
Category: Grace
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
Cast Your Cares On Him
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
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
Surgery Tomorrow (Thursday, March 27)
As Jon mentioned, Grace is having ear surgery tomorrow to explore what's going on, get a biopsy, and maybe get a tube in.  The oncology/NF1 doctor also managed to schedule her bone marrow aspirate for the same day so Grace will not have to be sedated twice in a few weeks. Prayers for all... (More)
Posted by joyful on March 26, 2025, 6:10 am
Category: Grace
A Prayer When You Are Faced with an Incurable Diagnosis
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
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
Possible neurofibroma
From all outward appearances, Grace has been doing very well. She's eating well and gaining weight. All her blood numbers look good. She only has one more week of her last medicine. However, I noticed a dark spot in her right ear and wondered if it could be connected to her hearing... (More)
Posted by joyful on January 31, 2025, 3:13 pm
Category: Grace
New Green Ember book giveaway
Because he likes to compete with Brandon Sanderson, SD Smith is launching a new Green Ember book today.  Our family loves the Green Ember series maybe even more than the Stormlight Archive. I've mentioned before that the soldiers' oath has special significance to us now that Faith has... (More)
Posted by joyful on December 6, 2024, 2:33 pm
Category: General
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
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