Search Results: great

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 weight off of us.  Until a couple days ago, it was seeming like it was quite likely going to be a bad answer, as we've been praying and thinking over... (More)
Posted by jondaley on June 20, 2025, 2:35 pm
Category: Faith, 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
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
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
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
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
Where is Elbereth?
Last weekend, Heather took all of the girls on a retreat and had a lot of fun together.  Those of us at home had a work day at Grammy's and another friend's house and then had a really great day at home with a friend from church.  Elbereth, Jonathan's snake, was out and various people... (More)
Posted by jondaley on November 12, 2024, 5:18 pm
Category: Jonathan
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
Central line is out!
Line removal surgery was successful. She did great for the IV. She came out of anesthesia quickly and they were home by 4:30. It is strange to her to have her line out. But next week she'll be able to have her first bath in a year! She is excited about that.  After she got... (More)
Posted by joyful on October 25, 2024, 9:40 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
HD Girls' Soccer Orange Out Game - September 11
Faith's soccer team is having a leukemia awareness game in honor of her and Grace and our family. September 11, 2024 4:00pm Hillsboro-Deering High School soccer field It would be great to see any of you who can come! (More)
Posted by joyful on September 2, 2024, 11:44 am
Category: Faith, 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
Day +146: Discharge Today!
Grace is all set to leave in a few hours - just waiting on paperwork. Her potassium is a little high, but they had taken off her potassium-lowering drug, and she has been eating 4-5 bananas a day, so they expect she will be fine once she goes back on her regular meds and has more choices of... (More)
Posted by jondaley on July 3, 2024, 9:28 am
Category: Grace
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