So, so so so so so.

Yesterday we met with Olivia's geneticist to discuss the latest MRI and Olivia's overall health. 

So, good news? Not really. 

Better-than-we-were-thinking news? Sort of.

Anyway, let's get to the ugly. 

Olivia has a "new to our knowledge" tumor in her left ear/neck area. The geneticist and neuro-radiologist took time today to compare a number of Olivia's past MRI scans. Apparently, this tumor has been there since 2010. 

Thinking back to 2010, we (parents and doctors) were focused on how Olivia's skull fracture was healing. The scans at the time of her accident also found the optic pathway tumors, and then it looked like they were causing vision loss and she may need to start chemo (Details can be found in the links on Olivia's NF1 page).

So no one was paying attention to her neck. 

What does this mean? 

So, this news is good in that the tumor's growth has been occurring over the last 2 years instead of over the last 6 months. There is evidence the left neck tumor is going through an active growth phase - more visible asymmetry of her face, chewing with mouth open more than usual, complaining about ear pain when she wears headphones - but it's also possible Olivia is going through an active growth phase as well. 

So, the plan. The plan. The plan. The plan.

We have her Nov. 2012 MRI which shows about 90-95% of the tumor. Olivia will have another MRI in 3 months. She will have a third MRI 3 months later. They will examine the volumetric growth rate of the 3 scans. If the growth rate is less than 20%, we leave the tumor alone. If it's more than 20%, then it's time for action. 

The 3 possible options with NF tumors- 

First option- leave it alone if it's not causing problems or growing faster than Olivia, such as the ones on Olivia's optic nerves- no vision loss, stable size, no action. This is the best case scenario. 

Second option- surgery to de-bulk the tumor, which is the last resort treatment. It's unlikely surgery would get all of the tumor and the tumor is growing on facial nerves which could mean loss of sensation of her face.

Third option, chemo to slow the growth. 

So, so so so so so, we wait. 

Last night I was talking all this over with my mom and she gave me a pep talk (which I needed, moms are good at that), reminding me of all the good things-

Olivia's optic pathway tumors are stable. The tumor above her right eye is stable. The tumor inside her brain is shrinking- the MRI report states "treatment is effective." What treatment? There is no treatment. Only a little miracle easily overshadowed by the bigger worries. 

Yesterday, the doctor was impressed with her happy attitude, her coordination, her ability to sit next to the edge of the table without falling off, her ability to contentedly play while we talked, her smiling and smirking semi-cooperation (Olivia can you raise your eyebrows? She replies with a smile so big it crinkles her whole face, "No" showing the doctor exactly what he is trying to see- that there isn't any face paralysis). 

Olivia is happy. Yes, some things are harder for her, but she keeps going. She is a unique and wonderful part of our family, and we love her so dearly.