Daley Ponderings

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)

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)

Wednesday's many tests all went well. The MRI showed shrinkage of the tumor, especially around the ear canal (less so in the cheek/salivary gland.) The hearing test confirmed Grace's attestation that her right ear is significantly improved. Her eyes are still perfect. Her heart is also good, no... (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)

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)

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)

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)

Here's a quick update. Grace has some virus that she's fighting off and she gave it to me, too. In medical news, she had a checkup and echocardiogram on Tuesday and all that looks good. So far we haven't observed anything noticeable, either good or bad. She got fitted for a hearing aid, and... (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)

One year ago today, our older kids got to see a total solar eclipse, and Grace came home! These annual milestones are flying by this year, and we are thankful.  Grace's NF1/oncology doctor called Jon with biopsy results on Friday. It is the opposite of what we were hoping. Both biopsies... (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)

Today is Day +365. One year ago, this is where we were: Today, Faith is recovered enough to participate in On Belay's Teen Winter Outdoor Adventure (pictures may come later, since she is there as I type.) Grace had her first post-chemo haircut (just bangs) the other day.... (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)

Grace has been enjoying walking in the snow and climbing on the plowed parts.      On Wednesday, December 11, 2024, we took her NG tube out on purpose! She had been eating and drinking well, and we trialed no formula for six days. She still gained 0.2 pounds. Now she... (More)

Line removal surgery was successful. She did great for the IV. She came out of anesthesia quickly and they were home by 4:30. It is strange to her to have her line out. But next week she'll be able to have her first bath in a year! She is excited about that.  After she got... (More)