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The last couple of days have been tough, but today is looking up. At 2:00 this morning, Jon called me to say that her breathing was worse and they were considering bringing her up to the ICU. I called my sister, she prayed for us. 45 minutes later, Jon texted to say that they had increased her... (More)

Posted by joyful on March 1, 2024, 10:50 pm
Category: Grace

Pain and Poop

The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an... (More)

Posted by joyful on February 28, 2024, 7:52 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

Day 0 - Waiting

Faith's surgery went well. Her vitals stayed stable the whole time and they are all happy with how it went. She said coming out of anesthesia was just like waking up in the morning only she couldn't lift her head at first. Jon went down to be with her and I stayed with Grace. Grace threw up... (More)

Posted by joyful on February 8, 2024, 2:24 pm
Category: Grace

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

Days -8 and -7

T-minus seven days and counting. Transplant Day is Day 0 and they count all other days from that. Yesterday, I left off while Grace was still sleeping. She woke up slightly grumpy, but soon was fully awake and her normal self. Chemo every six hours, blood draws every half hour (!) plus... (More)

Posted by joyful on February 1, 2024, 2:21 pm
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

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

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

Pocket Notes

I am posting my backlog of pocket notes. Sometimes details are sparse. 2/1 - Jonathan, "Even Einstein didn't have a triple-digit IQ." Noah, "Isn't that the guy with screws in his ears?" Jonathan, "No, that's Frankenstein." Noah is losing teeth all the time, I have trouble keeping track... (More)

Posted by joyful on March 31, 2017, 12:00 am
Category: Jonathan, Noah, Faith, Joy, Jeremiah, Nathaniel

Pocket Notes

I am posting my backlog of pocket notes. Sometimes details are sparse. 1/4 - The whole family plays Cousin Memory. Nathaniel repeats incessantly, "I turn! I turn!" January - Nathaniel knows where all the dishes go. He loves helping to unload the dishwasher and he is good at sorting... (More)

Posted by joyful on January 31, 2017, 12:00 am
Category: General, Jonathan, Noah, Joy, Jeremiah, Nathaniel

Pocket Notes

I am posting my backlog of pocket notes. Sometimes details are sparse. 11/10 - Nathaniel was a messenger to me from Joy: "mum" [come], held my hand to bring me to her. 11/22 - Jeremiah singing while playing, "I love you God, 'cause you make me happy..." 12/4 - Joy pinworms ~12/10 -... (More)

Posted by joyful on December 31, 2016, 12:00 am
Category: Noah, Joy, Jeremiah, Nathaniel

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