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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
Leukemia
The only known curative therapy for JMML is a bone marrow transplant, so we will be going down to the Boston Children's Hospital/Dana-Farber Cancer Institute . Their team is one of the leading cancer centers for treating JMML. We had our first visit on December 12, and are still processing... (More)
Posted by joyful on January 8, 2024, 2:38 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
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
Nathaniel's First Enjoyable Snow
April 4, it snowed six inches.  The next day, I wrote this: Today the snow is still there and the sun is out and the sky is bright blue.  It feels like a gorgeous February day! But since it is April, Nathaniel is just that much more developed that he can enjoy this snow day to... (More)
Posted by joyful on April 17, 2016, 3:59 pm
Category: Nathaniel
Karate Tournament, Standish Maine
On Saturday, March 26th, Jonathan, Faith, Joy and I participated in our first karate tournament. The whole family rose bright and early so we could drive the two hours and 15 minutes to Standish, Maine.  This tournament is relatively small, with only about five dojos participating.... (More)
Posted by joyful on March 31, 2016, 1:14 pm
Category: General, Jonathan, Faith, Joy
January 2016 Pocket Notes
1/4 - JPD, breaking off celery stalk, "Wow! Big whacker!  Bad guy come in our house, me whack him!" 1/4 - NPD signing "more" 1/5 - Joy, holding necklace, "I made it symmetrical, with yellow in the middle." 1/7 - NPD said, "amen" after we did at dinner.  This has happened a few... (More)
Posted by joyful on March 1, 2016, 3:07 pm
Category: Noah, Faith, Joy, Jeremiah, Nathaniel
Every Day Is A Good Day
Yesterday was an exhausting day, so I made sure to get us ready for bed early.  We were in bed by 9:00.  But Jeremiah kicked his covers off just about every hour and asked me to put them back on again.  By 3:30 or so, his medicine had worn off and he was wheezing and... (More)
Posted by joyful on April 23, 2015, 9:34 am
Category: General, Jeremiah
Giant List of Pocket Notes
I'm very much behind on the blog.  But I have kept the pocket notes safely typed up in my email.  So here goes. In June, the kids and I made a trip to Florida to visit my parents, and my sister and her kids visited, too. 6/14 - Joy, "Mommy! I saw a dinosaur!"  (It was a... (More)
Posted by joyful on December 22, 2014, 2:04 pm
Category: General, Jonathan, Pregnancy, Noah, Faith, Joy, Jeremiah
Daley Vacation Washington DC
Got a bunch of spam comments and then when I was looking at posts, the boys pointed out that my last post was a month ago and I said "trip to DC goes in a separate post"...  So here we go. When we went into downtown to see the sights, we split up into smaller groups.  Jonathan,... (More)
Posted by joyful on April 23, 2014, 7:03 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
Catch Up Pocket Notes
12/4 - F putting on chapstick.  Joy recalls, "Last time my lips sting.  Now my lips better." 12/6 - JDD, in a growly voice, with a straw stuck in his teeth and the other end in a glass of water, "I am the savage, saber-toothed mosquito!" 12/6 - JPD upper right primary incisor 12/7 -... (More)
Posted by joyful on January 18, 2014, 8:52 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
Pocket Notes
9/13 - A Friday. Jonathan had been asking me if he could read Harry Potter for a while.  I told him I needed to talk to Daddy about whether we thought he was ready, but I kept forgetting.  The strategy that worked was asking me in Daddy's presence so I didn't have time to forget. ... (More)
Posted by joyful on October 19, 2013, 8:08 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
Marriage Retreat
Heather and I had the opportunity to attend a marriage retreat with 10 or so couples from our church this weekend, up at Rangeley Lake in Maine (thanks Scott, for the house!) We were the youngest couple (by far, the average marriage length represented there was 31 years), and we haven't... (More)
Posted by jondaley on October 7, 2013, 12:59 pm
Category: General
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