Olivia - Nov 2012 MRI Update - Part 1

I don't know much, but I've had a few questions from our wonderful family and blog readers who love and care for Olivia, so here's what I've got. 

First of all, Dr. V, Olivia's genetics doctor, has been out of the country for a conference. That happens when you have the best and other people want to talk to him too. I don't know if we'll get a chance to talk to him this week with the Thanksgiving holiday. But we already have an appointment scheduled with him on Nov. 29th for Olivia's yearly follow-up so *for sure* we'll learn all the nitty-gritty details then. 

 Anyways, here's what I know so far - from the MRI report:

{1st} 

Heterogeneous signal in the left parotid gland and masticator space with asymmetric mild enlargement of the left pinna. 

{2nd} 

Heterogeneous attenuation and enlargement of left parotid gland, masticator space, and a portion of the left pinna and likely representing a plexiform neurofibroma. 

I checked out an anatomy book from the library and used this medical dictionary. Cause I need help. And the anatomy book is going on my Christmas list because it's awesome. 

heterogenous- not the same. Not the same as "normal" or her right side or past MRI images of her left ear? 

attenuation- I think this refers to the energy level? The first section called it a "signal."

parotid gland- largest salivary gland located by left ear and jaw bone. 

masticator space- to masticate is to chew, so I'm guessing the tumor is pushing into the area where she chews? 

pinna- outer ear, visible part of the ear

Sidenote: the MRI reports always have words like "presumed" and "likely" but the doctors (neuroradiologists, genetics doctors, and so on) are confident that what they are seeing is what they say it is. Especially when the patient is known to have a condition like NF1. 

So, she has a new tumor in her left neck & ear area - in the visble part of her left ear, the parotid gland, and chewing zone. 

Her left ear does look a little fatter than her right ear. She has been frequently chewing with her mouth open lately- I'd chalked that up to being a 5 year old, but??? 

So it's there. What next? 

We start praying for miracles. We've seen them before. We know they happen. Best case scenario- it's not harming Olivia in any way so we watch and wait and watch some more. Other options would be surgery to de-bulk or chemo to shrink. 

Of course, we will do whatever will be best for Olivia. Love that girl.

The GOOD NEWS: 

Her optic nerve tumors are stable. 

The plexiform in her right eye cavity is stable.

The other tumor in her brain (right midbrain tectum) has decreased in size AGAIN. 

We are SO SO SO THANKFUL!