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)

Jon was reading through Grace's test results and saw that the most recent bone marrow report mentioned the JAK3 mutation. He contacted her doctors because we thought that one was gone following the transplant. Dartmouth doctors can't see her Boston results to compare  so they contacted... (More)

We had our appointment with the NF1/oncology doctor yesterday. It turns out the neurofibroma is even bigger than we thought. In addition to what we already knew, which is that it goes from her external ear where we can see into her middle ear, it also extends down under her ear into her parotid... (More)

As far as we know, the surgery went well. He took two biopsies, one in front of the eardrum and one behind. There was not much fluid, so he did not put in a tube. We will get results in several days. The bone marrow aspirate also apparently went well, and that also takes about a week to get all... (More)

Grace has had a fun birthday overall, with balloons and presents and blowing out the candles. But tonight, during her line flush, the white side busted a hole through, up above the clamp, near the Y . We did our best with a paper clip clamp, but Jon took Grace to the fire station... (More)

Heather is better at writing the updates than I am, though I've been intending to write a few since we've been back in the hospital. She has been doing quite well the last few days and much more cheery.  Nothing like a colonoscopy to cheer you up I guess.  I hadn't been paying... (More)

We left the hospital at 5pm today and are "home" at our new apartment and working out this phase.  Lots of meds to organize and schedule.  Getting used to a quiet room, so now we can actually hear the feed machine, where I never really heard it before.   Heather will be... (More)

Grace had a great day today, despite staying up until after midnight (I went to sleep, but I asked the nurse in the morning, and she stayed up reading her new book and trying to not let the nurses check her oxygen levels since that would involve taking away her light...) She came to rounds in... (More)

My place beside you, My blood for yours, Till the Green Ember rises, Or the end of the world! One of our favorite series is The Green Ember, by S. D. Smith . Rabbits with swords, new stories with old soul, heroes and villains, joy and grief, hope and longing, with love and... (More)

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)

From an email written to my mom on April 4, 2015 at 7pm. Just after noon, Noah came screaming in from outside.  He was holding one hand with the other and blood was dripping.  I took him straight to the sink to wash off.  He couldn't tell me what had happened and there was... (More)

1/25 - Joy, about ready to dance, "Mommy, if you don't see this show, you won't see it again, EVER!" A good reminder to be present in the moment!  I turned away from the  computer and gave her my attention and I watched her beautiful solo dance show. 1/29 - Reading with Noah... (More)

5/1 - Joy playing with even/odd dot cards.  Didn't quite get the concept but sometimes was lucky, so I praised the correct answers.  Then 6/2 - much more consistently correct. 5/1 - Jeremiah, watching the kids in karate class, copying them - doing punches from the "en guarde"... (More)

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)

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)