Search Results: pray

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
Plexiform Results
An ENT, a radiologist and an oncologist walk into a bar... Oh, maybe not, but they at least had a discussion about Grace while looking over the MRI and CT scan together and the conclusion is that it isn't a plexiform fibroma at all!  Which is what Heather has had the faith to pray for... (More)
Posted by jondaley on March 21, 2025, 5:19 am
Category: Grace
Upcoming appointments
Grace has her ear CT scan, and audiology and ENT appointments this Friday, March 14. April 17 is the scheduled date for her next bone marrow aspirate; that will be at Dartmouth this time. Fun quote from yesterday, "You aren't Joy any more. Your middle name is 'Mommy' now." (More)
Posted by joyful on March 12, 2025, 9:09 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
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
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
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
Broken fibula
Sometime recently, Grace fell off a wooden block that she was using as a stool. I thought she had twisted her ankle. She would complain on and off, but still often insist on walking. Then Sunday, Noah came to me and asked, "Did you know that Grace's foot is crooked?" So we decided it was time... (More)
Posted by joyful on October 30, 2024, 9:17 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
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culpable-adaptable