Update: Olivia & NF1

A problem is not a problem unless its a problem. 

That's my new mantra these days and it's especially applicable to Olivia & NF1. 

Olivia has had a busy month. 

Every time we meet with one of her specialists, we learn something new. They tend to say things like "And, of course, she has all these deep tissue neurofibromas, but I'm sure you knew about those." 

Um, no, not really. No, we didn't. 

"Well, we don't need to worry about them, because they aren't doing anything."

And they are right, a problem is not a problem unless its a problem. 

We met with Olivia's genetics doctor to go over the National Cancer Institute's (NCI) results:

Understanding the results: 

These images are of the plexiform neurofibroma in Olivia's left ear/neck area from the 3 MRIs she did in 2013. The plexiform is the brighter grayish area on the right side of the images.

(1) There was a 16% growth rate from 2/2013 to 7/2013. 

(2) There was a 32% growth rate from 2/2013 to 12/2013, or another way of looking at it, a 16% growth rate from 7/2013 to 12/2013. 

So it's growing and continuing to grow. But it's growing under 20%, which is sort of the cut-off rate of needing to do treatment, and it's not interfering with her airways, arteries, eating abilities, hearing, etc. 

But it is growing, continuing to grow, so another MRI in June.

And it seemed like she was having trouble with some tongue movements, so it's back to her ENT. The other ENT. Do people have 2 ENTs? She also has 2 opthamologists. So hard to keep up. 

Then we met with the oncologist to discuss possible treatment options. It was agreed that treatment is not needed at this time, but it's good to be knowledgeable of possibilities, even if they will probably change in the next year, 6 months, weeks, days.

Then we met with an opthamologist/facial surgeon to discuss a different plexiform above Olivia's right eye that also appears to be going through an active growth phase- again knowing that surgery is not necessary at this time, but it's good for the doctor and us to have an idea of where the baseline is at. 

But then I hear new things, like the one above.

Like this- "She has a slight turning in of her right eye, which may be caused by the optic glioma on her optic pathway tumor."

"But I'll let so-and-so and so-and-so (other specialists we didn't have any plans of seeing anytime soon) take care of addressing that."

And "she does seem to have a slight loss of vision in her left eye." 

"But again, I'll let so-and-so and so-and-so take care of addressing that."

 And so we have more appointments this summer with so-and-so and so-and-so.

And I just tell myself, "A problem is not a problem unless its a problem."

And I know, without a shadow of doubt, that Olivia is in God's hands. That he loves her and is watching over her, from little things to big things.