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Sailing Trip!
Jeremiah and I will be with Heather's first cousin once removed and sailing from Florida to Connecticut starting tomorrow. We've...
jondaley, 16 July 2025 |
Great results
Wednesday's many tests all went well. The MRI showed shrinkage of the tumor, especially around the ear canal (less so in the...
Healing and Testing
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...
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...
June 2025 Biopsy Results!
Short version of the post - all good results! You can read the longer version below. We are very happy and it has been a...
Bone Marrow Biopsy
The test is done and we are back home. Nothing too eventful to report. Our regular physican's assistant did the biopsy, so...
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...
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...
Hearing aid
On Thursday, Grace got her hearing aid! They did a whole hearing test so they could program the device to her exact needs. The inner ear...
Day +456
Here's a quick update. Grace has some virus that she's fighting off and she gave it to me, too. In medical news, she had a checkup...
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...
Plexiform
We had our appointment with the NF1/oncology doctor yesterday. It turns out the neurofibroma is even bigger than we thought. In addition...
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...
Day +413, ear surgery
As far as we know, the surgery went well. He took two biopsies, one in front of the eardrum and one behind. There was not much fluid, so...
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...
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...
St. Patrick's Raining Taco Day
Today is the day, one year ago, that Grace was allowed to exit the hallway doors of 6 West and live in a place other than a hospital...
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...
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...
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...
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...
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...
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...
NG tube out!
Grace has been enjoying walking in the snow and climbing on the plowed parts. On Wednesday, December 11,...
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...