Olivia MRI

Olivia had an MRI last week. In all the pre-authorization, pre-registration, instruction calls the nurse always tells me Olivia will need my undivided attention so don't bring other kids with me. I say ok. 

And for the last year I've gone ahead and taken Austin or Nyah with me. 

My dear, sweet older children were under the misguided impression that Olivia was off having a party without them, where she got to drink soda and eat oreos and bring home toys. No amount of telling them that wasn't all she was doing has been as convincing as them seeing for themselves what she is doing. That was my primary reason for deciding to take them with me. 

The most awesome, wonderful, inspiring, and unexpected blessing for me has been seeing Austin and Nyah's love and concern for Olivia as they play with her, wait with her, encourage her to be brave, hold her hand, help wake her up, grab drinks and snacks for her, make sure she has her prize, and be willing to help out in any way needed. NF1 is not just Olivia's problem, it impacts our whole family. 

Olivia had a really hard time with the idea of going into the MRI machine, which has never happened before. Her attitude in the past has always been "can we do this already?!" I think as she's getting older and more aware of the world, she {overall} has more things she's afraid of and this is currently one of them. So it's normal, but that certainly doesn't make it any easier for any of us - Olivia was sobbing and clinging to me, even after she dozed off from the sedation meds, Nyah was pensive and worried about her while we waited, and I felt like crying along with her, but needed to be the brave mama for my girls. Don't worry, I cry about it plenty at other times. 

  

I haven't talked with Olivia's doctor or received a copy of the MRI report yet. I did have a few minutes with the radiologist after the MRI was over so I know a couple things. 

First, the new-to-us-radiologist-just noticed-it-last-time tumor is only in the parotid gland area (around Olivia's lower left ear/neck/jaw joint area) - even though the tumor has been in her scans for the last couple years, unnoticed, we didn't have a scan which showed the whole tumor, so we were worried it maybe extended down her neck or into her spine, and it doesn't.

Second, the tumor has definitely grown significantly since Olivia's MRI 9 months ago, but it's harder to tell how much it's grown since the MRI 3 months ago. The MRIs will be sent off to the National Cancer Institute where they will measure the volume of the tumor over these scans and the next MRI in 3 months. 

I call this "goodnews/badnews" - the tumor isn't as extensive or hasn't had a huge growth spurt in the last 3 months as feared, but it's still a freaking tumor in my daughter's neck. 

I'll hopefully talk with Olivia's doctor this week and get his impressions. And I'll receive my copy of the MRI report so if there's anything else, I'll post another update. 

Otherwise, we wait. wait. wait.