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Admission Day and Chemo Begins
Based on the number of supportive messages we got yesterday, I know you are all eagerly awaiting an update. We arrived at the Dana Farber Jimmy Fund Clinic for lab draws and "here's what's happening" meetings. We sucessfully ordered Grace some food, and then we had to pop across the street... (More)
Posted by joyful on January 31, 2024, 6:43 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
Her smile is still cute
Jon and I both went with Grace up to Dartmouth today.  The dentist met with us pre-op and said after looking at the x-rays, she thought her front teeth looked really bad and she expected to have to take out the four upper front teeth.  This just seemed horrible to us, but I signed the... (More)
Posted by joyful on January 19, 2024, 8:51 pm
Category: Grace
Third Dentist...
Warning: I'm feeling better now, but the following post pretty accurately how I felt for most of today. After a good appointment in Hillsboro, they still wanted us to go to a pediatric dentist who was familiar with chemo/transplant issues, so Heather headed up to Dartmouth this morning in the... (More)
Posted by jondaley on January 16, 2024, 11:51 pm
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
Pre-transplant workups
We are heading to Boston tomorrow and Thursday for a myriad of appointments. Faith will also have her donor preparation appointments. I also discovered yesterday that a segment of our friends still had old dates. Because of our Christmas COVID, everything got postponed. So if all goes as... (More)
Posted by joyful on January 9, 2024, 10:07 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
Dartmouth Emergency Room
The pathology report indicated no parasites, and no bacterial infection, but confirmed the swollen lymph nodes. The doctor said, “I do not like the look of her paleness, and that spleen is really big. We need to see inside; go downstairs and get to imaging right away.” Grace had an... (More)
Posted by joyful on January 8, 2024, 2:37 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
Pregnant!
We were intentionally not posting online to allow for some in-person notifications, but we are happy to now announce that we are expecting a baby in late May!   There are various people rooting for a girl to make the statistics and/or pattern more "fair", but we don't know for now and... (More)
Posted by jondaley on December 14, 2023, 3:37 pm
Category: Pregnancy
Backlog
Jon has implemented a system for me where I can send an email to post on the blog. I will be back-dating posts so they flow with the timeline of our lives. It will take a while, but I will eat it in small bites! (More)
Posted by joyful on June 4, 2020, 11:38 am
Category: General
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
February 2016 Pocket Notes
2/2 - Noah and I walked past the food pantry on distribution day, and saw a friend of ours heading there. He asked if she was donating food and I explained that she was receiving food.  He wondered why she needed to get food from the food pantry, and we had a good discussion about the... (More)
Posted by joyful on March 1, 2016, 3:16 pm
Category: General, Jonathan, Noah, Joy, Jeremiah, Nathaniel
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
Pocket Notes
Faith had a blast at Star Island with Grammy and Papa. 7/25 - JDD, explaining why he likes to use a certain spoon for his breakfast cereal, "That spoon is special to me, because Grammy gave it to me for Christmas last year." 7/28 or 29 - Joy had a cold and I gave her 1 or 2 nebulizer... (More)
Posted by joyful on September 14, 2013, 11:30 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
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