Search Results: scheduled

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
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 room! They played Raining Tacos for her exit parade, so my thought is to celebrate each year with tacos for dinner. (And maybe a shamrock shake thrown in.)... (More)
Posted by joyful on March 17, 2025, 8:16 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
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
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
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
Day +196: Long Clinic Visit, Kidneys?
Jon and Grace just got back from a very long clinic visit at Darmouth.  Jon did not have time to tell me much, since he had to catch up on work. Grace's creatinine level was high, so they are concerned about her kidney function.  They double-checked that number and it was still... (More)
Posted by joyful on August 21, 2024, 5:19 pm
Category: Faith, Grace
Day +75, No News is Good News
As they say, no news is good news.  Not much exciting has been going on lately.  Grace is eating a fairly regular diet at meals, which has always been pretty small.  Yesterday, she drank a lot, which hasn't been common for her, so we give her 600ml of water via her NG tube, 50ml... (More)
Posted by jondaley on April 23, 2024, 6:40 pm
Category: Pregnancy, Grace
Day 0 - Harvest
Faith's surgery is scheduled for 7:30 this morning.  We don't know how long it will take for the lab to process her marrow and then get it to Grace yet. Here are some pictures from yesterday. (More)
Posted by joyful on February 8, 2024, 4:25 am
Category: Grace
Day -1
I woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to... (More)
Posted by jondaley on February 7, 2024, 12:24 pm
Category: Grace
Appointments today
Please pray for Grace's appointments today. Extensive dental work at 11AM under sedation (fillings and crowns), and sedation means fasting from now until after she wakes up; and then CT scan in the afternoon. We are scheduled to be there all day, so coming home to pizza and hymn singing will be... (More)
Posted by joyful on January 19, 2024, 6:42 am
Category: Grace
Two Days of Appointments
For the most part, these last two days went pretty well.  Grace was a trooper as we navigated the multiple confusing buildings and talked with many providers and was poked and prodded by various specialists. Her audiology appointment went pretty well.  The doctor was impressed with... (More)
Posted by jondaley on January 12, 2024, 3:18 am
Category: Grace
Next Steps: Boston Children's Hospital / Dana Farber Cancer Institute
Due to getting COVID, Grace's transplant date has been re-scheduled and we are currently scheduled to start the prepatory chemo (much stronger than the previous chemo she has received) on January 30th and then the bone marrow transplant a week later. We expect to be in the hospital for at... (More)
Posted by joyful on January 8, 2024, 2:51 pm
Category: Grace
Grace: Two Years of Unexplained Medical Issues
(this was written January 2024, referring to Grace's first two years of life) When Grace was about six weeks old, right at the beginning of December 2021 , I noticed that she had “ café au lait spots .” I looked it up on the internet, and discovered that these... (More)
Posted by joyful on January 8, 2024, 2:33 pm
Category: Grace
1 2 3  Next»
culpable-adaptable