SUPER DUPER FABULOUS GREAT WONDERFUL TERRIFIC NEWS

I heard from Olivia's NF1 specialist yesterday to go over what was discussed at the Tumor Board. It was SUPER DUPER FABULOUS GREAT WONDERFUL TERRIFIC news.

The 2 main points discussed:

1. The recent MRI - at the meeting the radiologist said there wasn't obvious progression of the tumors. I pulled out my copy of the MRI report and it says the right optic nerve has a slight enlargement (4.1mm to 6.3mm now) and the left optic nerve is stable. So the radiologist wasn't convinced this was "progression" of the tumors.

2. The eye exams - the NF1 specialist said they obviously couldn't count the results of Olivia's May 3rd eye exam as visual regression (results were left eye 20/80 and right eye 20/40), because her May 19th eye exam were so drastically different (results were left eye 20/40 and right eye 20/30). So they have to assume the May 3rd exam results were because she's 3 and all the challenges that go with giving an eye exam to a 3 year old. She calls the picture of the telephone a chair, the cake is called candles, she mixes up the cake and the hand, the bird is sometimes called a duck, and she guesses when she doesn't know - add in she isn't always the clearest speaker, she doesn't like going to the doctor's, we always have to wait around and get bored, and you can see how her results might be a bit like a roller coaster. Here is a link to the pictures she uses in her exams. I think if we took her to 5 more eye appointments we would end up with 5 different results - but maybe that would give us a median idea of what her vision really is.

Despite all that, there still seems to be a slight worsening of her vision, which means we have to keep plugging forward. Everyone at the Tumor Board agrees there isn't enough evidence to jump into chemotherapy, but we do need to keep a close eye on her eyes and vision. It is horribly ironic that had the oncologists had their way Olivia would have had her port surgery and first round of chemotherapy today. Well, they wanted to do it last week, but Kurt and I put them off a week for more tests. So it was scheduled for today.

And that's what our future holds: more tests!

So on June 17th she will have an MRI at 6:30am, the Visually Evoked Potential Test at 2pm (supposed to last an hour), followed up with another eye exam at 4:30. I have no idea why they think she is going to perform well with the eye exam after a long day of being poked and prodded, and under anesthesia and recovering, and staring at a screen for an hour, and sitting in the car and waiting rooms. After all, she will still be 3 in a month.