Daley Ponderings

Faith's surgery is scheduled for 7:30 this morning.  We don't know how long it will take for the lab to process her marrow and then get it to Grace yet. Here are some pictures from yesterday. (More)

I woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to... (More)

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)

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)

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)

We went to the Methodist Church today. It was so refreshing. It was communion Sunday, which was such a blessing. It's been a long time since I took communion. They anointed both Grace and Faith with oil and prayed for them and us. Such outpouring of love and support. And I don't know exactly how... (More)

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)

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)

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)

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)

I am posting my backlog of pocket notes. Sometimes details are sparse. 4/1 - JPD, "'I'm goin' back to my work, after watchin' Jonathan do that awesome trick,' said Popcorn Man." 4/1 - Nathaniel started saying "yes" clearly - so cute!! 4/3 - NPD do turtle puzzle, self w/ encouragement... (More)

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)

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)

I am posting my backlog of pocket notes. Sometimes details are sparse. 6/29/16 - Noah's party, kids building brick fort, all the kids at the party working together. Yellow jackets end of June, Nathaniel stepping up stairs, holding rail or wall 7/7-7/10 - Balloon Festival, hosting... (More)

Or: How This Mom Started Playing Minecraft They say that a good way to show love is to take an interset in what the other person is interested in, even if you wouldn't care about it on your own. I'm a busy mom and wife of an entrepreneur, right?  I don't have time for video games.... (More)