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 recommend for Grace since one of the chemos she received can cause long-term lung problems and she is more likely to have a harder time with respiratory illnesess.
• 3 visits to dermatology - this has gone really well, and it would have been good to meet with a dermatologist earlier, as the doctor changed out the skin meds she was on, and (perhaps in combination with figuring out thyroid dosages and lowering the Koselugo), her skin is 100% better, though as we enter into the drier winter season she'll need to use her lotions more often than she needed to over the summer.
• 1 visit to our dentist - nothing to report. Though oncology told us yesterday that one of the chemos she had causes long term teeth problems, and before pulling any teeth or major dental work, they need to check to make sure that the adult tooth exists and is in the right place, and is shaped properly, etc.
• 3 visits to endocrinology - mostly just to lay eyes on her; the doctor has been working on getting the dosage to get her thyroid levels within normal limits, and that has been a success.  Oncology just said to keep an eye on it as she gains weight, as the dosages will need to change.
• 1 visit to opthamology - everything looking pretty good, though they have some concerns about "thickening" around one of her retinas, but is is good for now.
• 1 visit to neurology - we like to do combination visits with neurology and oncology to make sure we are covering the bases with NF1 and JMML.
• 2 visits to oncology - this is Dr. Santacruz at Dartmouth, who we love and who we basically consider her primary care provider, though after the conversation yesterday with Boston, we need to have some conversations with all of her providers, as it is depending a little too much on each individual to be thinking about the whole picture, and I'm not sure specialists are that good at thinking that way, and while I'm comfortable managing much of her care, it is easy for us to not connect the dots across everything.
• 1 visit to audiology - hearing is still good (even with the lower dose of the anti-tumor med, so that is good news!).  There is always a question about one of the tests (air pressure/response), and from my view point, the test is greatly skewed by how the sensor is physically held into her ear, so I'm not entirely sure we are getting consistent tests to compare to each time, but the regular actual hearing tests are good, and the frequency responses are mostly normal.
• 1 visit to cardiology - this was just yesterday, so I haven't talked to anyone yet, but Heather said the report looked good.  And the valves look good to my inexperienced eyes.  I am going to ask someone to double check they aren't anything, as I don't remember those being there before.  Gemini tells me bright spots can appear due to reflections of the ultrasound waves, so perhaps it isn't anything.
• 1 visit to pulmonology - also yesterday, and because she is considered too young for a spiromometer test, they just do a walking test while monitoring SpO2 levels, and she did fine on that.  Prior to the appointment, I was wondering if they were going to have her do the spiromometer, so we practiced some in the car, and the oncologist was interested to try, partly just to get her to understand the test (everyone fails the first time they take it - I failed and the tech had to show me how to do it), but said typically they don't use that test until they are 6 or 7 years old.
• 2 visits to radiology: 1 "regular" MRI on her head/ears/eyes.  Another one scheduled for November.  She also got a bone density scan yesterday for the first time - the whole skeletal picture is pretty cool, so hopefully we'll get to see it in more detail than just me watching over the tech's shoulder.  People with NF1 are susceptible to weak bones, etc. When Grace fractured her leg last year, they were concerned about whether it was due to NF1, but due to how it broke, decided it was due to being on steroids too long, so were less concerned about anything going forward, but she'll get a scan every year or two.
• Countless blood draws, which fortunately she doesn't mind at all.

Whew! 

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