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Some Freedom, Some Nausea
The last post left you with Jon and Grace down in ultrasound. That procedure took two hours. They took hundreds of pictures - exploring all her internal organs. She does have vessel constriction in her liver, wgich is not unexpected with JMML. So since then, she has gotten another prophylactic... (More)
Posted by joyful on February 3, 2024, 5:44 pm
Category: Grace
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
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
Dinner in Boston
Had sushi after a day of appointments at the Dana Farber Cancer Institute.    We're staying overnight tonight. Had a lot of blood tests today and then a bunch of meetings with various providers to discuss next steps.   Audiology, dentist evaluations and an... (More)
Posted by jondaley on January 10, 2024, 6:20 pm
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
Isaac Memorial Reflection
I typed up my memorial service reflection for a presentation we did at our church recently.  I don't think it has been typed up before, so I thought I'd post it now.  (Am I allowed to be amazed at myself?) Heather's memorial reflection, March 16, 2003 Isaac Christopher Daley - a... (More)
Posted by joyful on June 17, 2016, 2:58 pm
Category: Isaac
Pocket Notes - Joy ties shoes, Heather does pushups, and more
4/3 - I said to Jeremiah, "Your shoes are on the wrong feet, sweetie."  He replied, "I not 'sweetie'.  Joy is 'sweetie'." 4/10 - Joy and I spent a grueling but satisfactory three hours earning our yellow and orange belts, respectively. 4/14 - Jeremiah, "It will be so so so fun if... (More)
Posted by joyful on April 17, 2016, 4:20 pm
Category: Noah, Faith, Joy, Jeremiah, Nathaniel
Pocket Notes
2/15 - JPD walked up to me and hugged my knees.  He now does this often. 2/19 - JDD quotes from The Incredibles, with an Indian flair: "This is your automated captain speaking. Would you like more samosas?" 2/24 - JDD "What's the difference between lo mein and chow mein, and why isn't... (More)
Posted by joyful on March 23, 2014, 5:44 am
Category: 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
11/8 - It was gusty and the maple seeds were being blown off our big tree by the thousands.  It was such an amazing sight!  The little helicopters were fluttering everywhere, even swarming like a host of grasshoppers or little birds.  The grand picture was the swarming, and then... (More)
Posted by joyful on December 5, 2013, 8:31 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
Khan Academy
The boys (and Heather has enjoyed it too - I haven't gotten to it yet) have really been enjoying Khan Academy this last week.  It is an educational tool, with lots of questions to test you on different skills.  Jonathan is especially motivated by the reward badges it gives you when... (More)
Posted by jondaley on November 9, 2013, 12:31 pm
Category: Jonathan, Programming, Reviews, Noah
Full Summer/Pocket Notes
Having a dad in the fire department is educational in more than just fire safety: 5/17 - Jon is called to an accident "involving motor vehicle vs. moose" 5/18 - Jonathan reads about moose and siberian tigers on wikipedia ~5 - Joy says "owee here" = outta here 5/20 - jpd 17 lb on our... (More)
Posted by joyful on July 28, 2013, 8:23 am
Category: General, Jonathan, Noah, Faith, Joy, Jeremiah
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