Daley Ponderings

Some pretty good appointments yesterday, and the snow (9 inches?!) wasn't too bad at all driving up to Dartmouth (one car sped by our line of traffic and a couple minutes later was spun off the road in the median, but she was already out of the car and on the phone, so presumably was fine, but... (More)

Grace is getting an MRI, and ECG, and bloodwork (including thyroid) tomorrow morning at Dartmouth.  I'm not sure how much the thyroid medicine is working, so we'll see what the numbers say.  Her skin is very dry and she has rashes in places, and also the dryness is itchy so she... (More)

As Jon mentioned, Grace is having ear surgery tomorrow to explore what's going on, get a biopsy, and maybe get a tube in.  The oncology/NF1 doctor also managed to schedule her bone marrow aspirate for the same day so Grace will not have to be sedated twice in a few weeks. Prayers for all... (More)

Grace had several appointments at Dartmouth today: audiology, ENT, oncology/nf1, lab draw This is my memory's summary of Jon's report to me: A lot of time for not a lot of progress.  Education/information, but no decisions. The ENT was not experienced, so they want her to see the adult... (More)

From all outward appearances, Grace has been doing very well. She's eating well and gaining weight. All her blood numbers look good. She only has one more week of her last medicine. However, I noticed a dark spot in her right ear and wondered if it could be connected to her hearing... (More)

We are headed home on Monday!   Grace will still have at least one clinic visit a week and depending on the labs that week, might have a second appointment, but we decided that for the sake of our entire family, we need to be home and it is worth driving back and forth as needed.... (More)

We've had some full days since our last post, so I'll try to catch you all up. On Friday night, Jon and the girls went to Camp Maranatha for the annual father-daughter retreat and the boys went to Boston to stay in the apartment. We went to Target to get some maternity shirts for Heather... (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)

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)

I am posting my backlog of pocket notes. Sometimes details are sparse. 9/3 - Referring to two years ago, Jeremiah said, "The other day of the oott-her day (stretched out, and louder) we tipped over in the big boat." He wanted to know if the motor boat was going to tip over or not. So he... (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)

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)

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)

9/2 - NPD definitely pulling up (on bathtub) - see Mom's post of Maggie P. 9/2 - NPD, "ma-ma-ma" "na-na-na"  JDD is convinced it means "Mom" 9/2 - Joy, "2+3 is 5. [pause] I learned that in bed."  Subsequently also taughtherself other addition facts. 9/2 - Joy making bracelet... (More)

3/2 - I told Jeremiah I'd clean up the (play) food because he was still playing with the cars.  He came up to me, gave me a big hug, and said, "Thank you" (sounds like Duh-doo).  So sweet! 3/2 - Faith offered to ask Dad-o to walk them to Joyful Noise, "'Cause...I want you to have... (More)