Wednesday, September 7, 2016

Olivia & NF1 Update

 Well, so. . . . here it is: 

These are the results from the National Cancer Institute (NCI) on the volumetric measurements of the plexiform neurofibroma growing in Olivia's left cheek/neck/ear area- pictures.

The vertical axis is the volume of the plexiform in milliliters The horizontal axis is time in months. The first dot represents the first MRI the NCI measured way back in February 2013 at 19.2 mL and the last dot is the MRI from December 2015 at 38.0 mL. So basically it doubled in size over 2 years and 10 months. 

What about more recents data? Well, we can't use the MRI Olivia did in July 2016 for a more recent update, because {for whatever lame reason} the radiology department didn't do a complete scan of Olivia's *only* plexiform currently going through a growth phase & being monitored- cutting it off right in the middle, even though the orders were identical to the orders of the last year. {deep calming breaths} So, Olivia will do another MRI in October- between 2 family trips & Kurt's lasik surgery. 
And then, we hope, it gets sent off to the NCI in a timely manner. 
And then, we hope, we get results in a timely manner. {Right} 

And then, if it still seems like it's growing at a consistent pace we'll look at treatment possibilities, likely medical chemotherapy trials of some sort, depending on what's available. 

So, other stuff: 

The latest MRI also found another low-grade glioma in her brain, but no need to worry about it unless it starts causing problems. {Stuff like that comes out of my mouth and it seems so surreal. Am I actually saying- and really feeling calm- that we don't need to worry about a brain tumor???}

Also, the other plexiform on her right eyelid is stable, as are the ones on her collar bone. {But, how can we know they are actually stable? The radiology department has been saying the growing plexiform was stable for the last 3.5+ years when the NCI's more precise measurements show it's actually growing consistently over time and doubled in size??? And I can look at her face and see it's been growing! Argh}

Optic nerve gliomas are stable {oh, that word again}, however she is experiencing loss of color vision in her left eye. As in, last time she did the test she was able to identify about half the numbers in the color vision test with her left eye, and just last week, she couldn't identify any of them. But the good eye doctor says he's ready to push out her visits to once a year, since the optic gliomas are stable {oh boy} and optic atrophy in the left optic nerve is stable {kill me now}

Olivia still has light sensitivity & frequent migraines- can you tell in the picture above? I feel a headache coming on just looking at the painful look on her face. We incorporate a lot of brain health guidelines like getting good sleep, eating well, exercising, vitamins, learning new things, etc., and hope that it all makes some kind of difference. 

In the last update, I talked about how Olivia had made some great strides in physical health & strength, but then she spent January through March sick with every Tom, Dick, & Harry illness that came through. Ever since then, she has been extra fatigued and has really struggled to regain her strength. She's been taking naps, which is way weird. We took a break from all outpatient therapies this summer and it's time to get back to PT. 

The fatigue issue may be related to sleep troubles. There is some concern that Olivia's tonsils may now be blocking her airway- last year when she had surgery the doctor left her tonsils in because they were supporting the palate and now they are maybe bigger and blocking the airway. Olivia did a sleep study last week and meets with the ENT next week. So more to come on that....

The fatigue issue may also be related to food/taste troubles. Olivia has lost some weight and has had changes to her food-tastes, which may be back to that growing plexiform in her left cheek/neck/ear area which has infiltrated all her glands and possibly made food taste differently to her. This plexiform isn't interfering with her airway at all, but may be causing other kinds of problems. {Or maybe she's just a 9 year old girl who has decided she doesn't like any of the foods she's eaten since the beginning of time- both options seem reasonable.} 

So that's mostly everything with Olivia & NF1 right now. 
Thanks for all your love & prayers & support!  


  1. We love you! You are all amazing!

  2. It's good to read the update. She is so beautiful. The Lord is on your side.


What's going on these days....

Kurt- Busy as ever with work  Decided to do his Master's degree Still playing guitar & charming our children to sleep Mana...