Search Results: test

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 got to talk to him a little bit, and he is going to research one question that we aren't sure about regarding what 97% chimerism test means. He did say false... (More)
Posted by jondaley on June 12, 2025, 1:40 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
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 test shows that she hears fine on that end. So the aid amplifies the sound so it can reach the inner ear.  She noticed new sounds right away, and she... (More)
Posted by joyful on May 30, 2025, 9:54 pm
Category: 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
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
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
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
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
Waiting for results
Screenshot of a video call on Thursday:  Friday's procedures went well. They got plenty of marrow for their tests. The endoscopy showed the esophagus healthy. The sigmoidoscopy showed her colon quite inflamed. The surgeon could not tell the cause, but was confident that the... (More)
Posted by joyful on June 30, 2024, 6:41 am
Category: Jonathan, Faith, Joy, Nathaniel, Grace
Hospital Update
Grace has been on a clear liquid diet until today where she is getting nothing into her stomach until anesthesia at 5:30.  She will be getting a complete GI scope and a bone marrow biopsy.  Please pray for the anesthesiologist and the surgeons as well as for Grace. Jon called this... (More)
Posted by joyful on June 28, 2024, 8:42 am
Category: Noah, Grace
Fever and Admission
When Jon and Grace got back from Dartmouth, Jon asked me to take her temperature.  He could feel that she was hot, but the thermometer they used at Dartmouth did not register a fever (it was the kind that you hold a centimeter away from the forehead.)  My initial armpit reading was... (More)
Posted by joyful on June 26, 2024, 8:55 am
Category: Grace
Belly Hurts, Updated
Today is day +133. (Jon updated this post) Grace has been having belly pain and a lot of mucus in her stool, often with blood as well.  We took her off cow's milk again (she had been asking for it instead of almond milk.)  We haven't seen much improvement in the last week, and she... (More)
Posted by joyful on June 21, 2024, 11:22 am
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 +100!
This is the day the doctors consider the transplant to be successful.  This doesn't mean that she's not still at risk for a bunch of things. But it does mean that Faith's cells are firmly established in her system and doing their job! (More)
Posted by joyful on May 18, 2024, 7:41 am
Category: Grace
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