Search Results: job

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
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
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
Discharge Parade
The kids who have been admitted for any length of time look longingly at the airlock doors that leave the hallway they are not allowed to leave.  So, when discharge day comes, it is a pretty exciting time. For those of you who are confused - yes this was published out of order since... (More)
Posted by jondaley on March 17, 2024, 11:00 pm
Category: Grace
Liver problems and more pain
Noah did a good job driving in terrible Boston traffic, but it meant we got home late and I didn't get to talk to Jon for very long last night. The ultrasound revealed that Grace definitely has problems with her liver; she has also been in more pain. By the time I talked to them, she was content... (More)
Posted by joyful on February 29, 2024, 6:43 am
Category: Grace
Day +12
Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway.  (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for... (More)
Posted by jondaley on February 20, 2024, 7:52 pm
Category: Grace
Good moments, Bad moments
Jon wrote today: When I said it was a "bad day" the other day, a nurse corrected me and said "good moments and bad moments". This morning was good and she played in the playroom for quite a while. She did throw up after eating. But has continued to ask for food, and hasn't... (More)
Posted by joyful on February 18, 2024, 8:40 pm
Category: Grace
NG tube no fun
I walked home late Monday night, because there was supposed to be this big snowstorm. Jeremiah was already asleep, sprawled all over the bed. In the morning, it was only raining Jeremiah and I had leftover pizza for breakfast, and we walked to the hospital in the rain. The nurses and child... (More)
Posted by joyful on February 14, 2024, 7:45 am
Category: Grace
Catchup the last few days
The last long update ended February 3 in the evening. In the wee hours of February 4 (Sunday) she got a blood transfusion for her hemoglobin level, which was expected. (They’re killing off her bone marrow, so her own body is not making as much blood.) Sunday morning, she got a dressing... (More)
Posted by joyful on February 7, 2024, 7:51 am
Category: Grace
A Snow Day From God
Today is our last day all together as a family for a while. God blessed it by sending a beautiful six inches of snow that cancelled our outside activities for the day. We plan on spending it cuddling and playing games (and packing for Boston.) Prayers for this week: Praises: We got a... (More)
Posted by joyful on January 29, 2024, 10:09 am
Category: Grace
Fertility preservation
Monday, Grace had pre-transplant bone marrow aspiration and bone biopsy. That's kind of boring. The interesting surgery came right after that procedure. Fertility preservation is something I had vaguely heard of. I know it's rather personal, but so is all this health information. We won't be... (More)
Posted by joyful on January 24, 2024, 12:41 pm
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
Heating
Since I'm on a roll of typing out the insulation we've used, I figured I might as well post about our heating systems too. We have five different heating sources for our home, and someday we'll get a sixth... 1a. Oil burner base board radiators. I grew up with base board radiators and I... (More)
Posted by jondaley on October 30, 2020, 10:46 am
Category: General, Reviews
Molars, Hair, Tape Armor
6/17 - Nathaniel gets three molars at once.  upper left, lower left, lower right.  The upper right made its appearance 6/22. 6/21 - Haircut day for some.  (It's pretty hard to get everyone in one day.)  I cut Noah's hair, and some of Jeremiah's (he got impatient and I... (More)
Posted by joyful on June 25, 2016, 7:06 am
Category: Noah, Faith, Joy, Jeremiah, Nathaniel
To Mom
Happy Mother's Day!  I love you.  Here is something I played in church this morning and thought of you. How Can I Keep From Singing? Love, Heather (More)
Posted by joyful on May 8, 2016, 12:24 pm
Category: General
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culpable-adaptable