These are the preliminary results of Grace's MRI. The NF1 team isn't available on Wednesdays, but the oncology team was merciful and gave them what they knew. You can get more details on the Daley Ponderings post.
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 great news is that it doesn't appear to be impacting her brain at all. In all likelihood, however, it is the cause of the mild hearing loss in Grace's right ear that has been observed consistently since before her transplant, but was always attributed to something else, such as her having a cold or recovering from covid. And once again, it was Heather who noticed the spot in Grace's ear, though it took months for the doctors to become concerned. How on earth do doctors decide when something needs to be looked into, and when "wait and see" is the better option? Sometimes intervention works best when it's done soonest—and sometimes it really is best not to intervene at all. I think teachers must have the same dilemma.
I'm very glad that one of Grace's doctors specializes in both oncology and NF1; I suspect she will be getting notified directly of everything medical that happens to Grace from now on, because communication amongst doctors doesn't appear to be all that it should be. The NF1 specialists, by the way, are at Dartmouth, not Boston, which is a much more manageable drive for the Daleys. It's shorter, for one thing—and there's no Boston traffic to deal with.
Hopefully today we'll see what the NF1 team has to say. They already have an audiology/otolaryngology appointment scheduled for March 4, and hope to get both oncology and NF1 doctors involved as well for a group discussion of what the next step should be.
Now for two fun stories from yesterday's adventures.
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 [Jon's] request), and she did a terrific job. She winced once at a loud noise, and then fell asleep to the soothing sounds of the MRI. (And that is sarcasm, if you couldn't tell.) 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.
Grace had been nervous about "going into the machine," but I know no one better than Jon at calming a child who is angry, fearful, or upset. And Grace has had more than a year of practice at lying still for medical procedures. I suspect that a good part of the reason the doctor had never seen nor even heard of a child that age not requiring sedation is that most parents don't know it's an option. Just as I finally discovered that dental procedures and colonoscopies go much better without anesthesia, but few dentists or doctors give patients this option. Kudos to Grace, and kudos to her parents for their strength in following through with what they knew was best.
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...
Now you know why unicorns are extinct.
Your last comment about unicorns being extinct was exactly what I had thought!
Great minds...!
