Olivia & NF1 - the latest

I've been trying to figure out what to say and how to say it. It's so simple and complex at the same time.

Simple: NF1 is a progressive disorder and it's progressing.

Complex: 
First and foremost, *for the most part* Olivia is doing fabulous. She spends most days running around the neighborhood with her sisters and friends, riding bikes & scooters, playing in the sandbox, jumping on the trampoline- happy and laughing. She loves sitting on the back porch with me in the early morning hours, watching and listening to birds, coloring while we chat and go over the plans for the day. She speeds through her chore and school chart so she can play games on the computer or watch cartoons. She's always looking for ways to help others- if you fall asleep on the couch you are guaranteed to wake up with a blanket covering you courtesy of Olivia. 

The last time I did an update on Olivia & NF1 was in November 2012. She did a follow up MRI in February 2013, which is the first MRI to get a complete picture of the plexiform tumor in her left ear/neck area. I spent the next 2 months playing phone tag with the genetics doctor. He finally left me a voicemail- he and the radiologist felt the tumor appeared stable from Nov. to Feb. so the new plan was to do another MRI in 6 months, and no need to send it to the National Cancer Institute (NCI) to have the volume measured. 

I felt uncomfortable with that and wanted to stick to the plan we discussed in November, but after another month of phone tag, I let it go. 

As I said, Olivia is fabulous *for the most part.* Unfortunately, the last few months she's been getting more headaches, chewing with her mouth open all the time, experiencing more pain in her left ear/neck area, and visually I can see that the tumor has been growing. 

In May as I was helping Olivia out of the shower I noticed another tumor (one she's had for a few years on her lower left back) was also bigger. I emailed the genetics doctor, heard back from him (yeah!), and we went to see him this past week. 

When he first came in the exam room he noticed the growth of the left ear/neck tumor right away. Later when he was doing the exam, he put pressure on the tumor and Olivia startled and grabbed onto my hand because of the pain- which is a big deal because she has a pretty high pain threshold. There are so many times we are going-going-going with all our activities, and she'll finally break down in tears and tell me she's had a headache all day long, but didn't want to stop. 

When looking at Olivia's growth chart it appears as if her growth rate is evening out- starting to plateau, while the tumor appears to be actively growing. This may mean the tumor is growing faster than Olivia is growing. 

So, the tumor is becoming symptomatic - causing problems. When talking about Olivia's tumors I've always said, "we leave it alone unless it's causing problems." Well, here we are on the cusp of "causing problems." 

Olivia will do another MRI sometime in the next few weeks. Again, they'll compare it with past scans and hopefully they'll see the need to send it off to the NCI to get the volumetric analysis so we can have actual measurements to chart the growth of the tumor.  Ahem. 

The genetics doctor talked about several potential chemo trials or chemo treatment options, but we'll have to wait and see what the MRI results are and what the doctors recommend. 

The other tumor on Olivia's back has also grown, but appears to be  a surface tumor instead of an invasive plexiform tumor. We just watch, wait, and see. 

All other tumors appear stable- hoorah. 

But the best part? Being the mom to this fabulous girl. Love her.