Daley Ponderings

Lest you think nothing has been going on, here was Grace's medical schedule since we last posted. 8 visits to primary care for vaccinations - she had to restart over as a baby, and get all of them over again - just one left, plus flu and COVID, which oncology told us yesterday they highly... (More)

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)

We have only read the test results ourselves and have not heard from any doctors yet. Her TSH is uncomparable, since the tests they do at Dartmouth don't go any higher than ">100" so is it 400 again, or 101 or 1000? But her T4 was up, almost to the normal range. So hopefully that means... (More)

Well, I didn't manage to post this yesterday when the day was a nice round, even number, so I get to post it today when it's a prime number! This has been a full summer for us. Noah was home. Grace got to ride at Summerfest just like all the other healthy children! She had... (More)

Jon just put this comment on a recent post, but I don't think most people get notified of comments, so I'm posting it here: She's getting an echocardiogram right now [July 9, 2025, 8:42am] , and then an MRI, regular oncology checkup, opthamology and audiology. We don't expect too much... (More)

Today is Day +500 and we have much to rejoice over! We are so thankful for Grace's good marrow results, so thankful to reach this milestone. I feel so much lighter now, and the smaller things that bothered me last week don't seem so bad anymore. Here are some recent pictures and quotes... (More)

Short version of the post - all good results!  You can read the longer version below. We are very happy and it has been a weight off of us.  Until a couple days ago, it was seeming like it was quite likely going to be a bad answer, as we've been praying and thinking over... (More)

On Thursday, Grace got her hearing aid! They did a whole hearing test so they could program the device to her exact needs. The inner ear test shows that she hears fine on that end. So the aid amplifies the sound so it can reach the inner ear.  She noticed new sounds right away, and she... (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)

Today is the day, one year ago, that Grace was allowed to exit the hallway doors of 6 West and live in a place other than a hospital room! They played Raining Tacos for her exit parade, so my thought is to celebrate each year with tacos for dinner. (And maybe a shamrock shake thrown in.)... (More)

As previously mentioned, Heather noticed a spot in Grace's ear last summer, and when the NF1 doctors heard about it, they were concerned that it might be a plexiform neurofibroma , and so scheduled an MRI for today to take a closer look. While it has shrunk on the surface, it is still there... (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)

Sorry we left you hanging about Grace's recent appointments. Here are some things to be thankful for about Grace. She did really well during her audiology appointment. It took a long time, but she followed all the directions and was cooperative as usual. She does still have some hearing loss in... (More)

The appointment with the NF1 doctor went well. One of her oncology doctors was also there, the one who works closely in the NF1 world. Jon didn't remember meeting the NF1 doctor, but it was right at the very beginning, during Grace's first hospital stay, when she was diagnosed. So, much to be... (More)

Sometime recently, Grace fell off a wooden block that she was using as a stool. I thought she had twisted her ankle. She would complain on and off, but still often insist on walking. Then Sunday, Noah came to me and asked, "Did you know that Grace's foot is crooked?" So we decided it was time... (More)