Daley Ponderings

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 inside her ear canal, and they officially diagnosed it today.  It is a benign tumor, like most NF1 tumors that she is at risk for.  Typically, they will grow and cause problems as they bump into other things, though sometimes they stop growing and might not need anything done, and really rarely, especially in children, can shrink and/or disappear.

The NF1 team at Dartmouth Hospital doesn't work on Wednesdays, but the onocology team didn't want to leave us hanging, and so called with the preliminary results this afternoon.  The good news is that it doesn't appear to be impacting her brain at all.

The radiologist recommends a CT scan to see how much the tumor is impacting a bone in her middle ear.  We already have an appointment with audiology and otolaryngology on March 4th, and the oncologists are going to try to get the NF1 doctors there as well, so they can have a group discussion about what to do next.  The oncologist's opinion was that surgery wouldn't be a good option, based on where it is.  So, I think the other option is "medicine", which I don't think she specified whether it is an oral chemo (which I know is the solution if she gets a tumor on her retina), or some other sort of medicine.  In any case, there isn't anything particular urgent about it, but we'll hear more next week and then I assume some really good answers in March.

The oncologist confirmed that Grace is "one in a million", saying that she had never heard of a three year old undergoing an MRI without sedation (which was my request), and she did a terrific job, she winced once at a loud noise, and then fell asleep to soothing sounds of the MRI. (and that is sarcasm, if you couldn't tell.  And MRIs have gotten signficantly louder than when I was involved in the Cognitive Center for Brain Research at Carnegie Mellon.  I think of the "chunk chunk" sound as a normal MRI, but it is apparently now common to have really loud motor/whining/horn sounds.  She twitched a little as she fell asleep, but her head had some padding around it to hold it steady, and I was told the pictures came out great.

I asked to see the pictures at the end, and Grace and I enjoyed looking at her eyeballs.  She also showed us her ears, though she scrolled by quickly (though I had a suspicion that her right side looked different from her left (which is possibly why she scrolled so fast), but Grace thought her eyes looked pretty interesting.

They gave her a stuffed unicorn to keep her company in the MRI, and she named it Candy Corn.  And she insists that it isn't a boy or girl, but just "Candy Corn", which has caused much debate among the kids about whether she understands the question, or whether unicorns have a different set of genders...