Wednesday, November 19, 2008

That Scarlet... she knew stuff

So, tomorrow is, in fact, another day. Well, today now. But, today is another day doesn't have the same fabulous, old Hollywood ring to it. But, today is definitely overall better than yesterday.

I got a phone call from Mandy's neuro-oncologist today at clinic. She presented Mandy's case to the tumor board again. They looked at numerous scans and compared them. When you look at most recent scan to most recent scan (which are only 8 weeks apart) there appears to be no different and merely stable.

BUT, when you compare the scans at the beginning of treatment to the most recent scan of a few weeks ago there is actually SHRINKAGE TO THE OPTIC GLIOMAS!

Can I get an amen???!!!

So, how about that?

This is big news!

Take moment and happy dance on that one, applaud and say thanks.

But wait, there's more. No ginsu knives for ordering right now, but, the tumor board also really feels that the areas of previous concern in the brain stem and the ventricles are areas of myelin vaculozation. This is a common brain anomaly in NF patients. It is essentially inconsequential. In the simplest most possible terms, myelin is the covering of nerves in the brain. Myelin Vaculozation means there are holes in the myelin. Overall, something that heals itself later in life. This is great news as we had been previously told that the areas in the brain stem and the ventricles were potentially catastrophic.

So, fabulous news there. Then there's the other area of concern, in the left parietal lobe. Nobody really knew what to make of it. It is presenting differently than the myelin vaculozation. So, it's not that. Could be a hamartoma, a benign tumor associated with NF, but doesn't look much like that either. It could be another low grade glioma, but no way to know for sure without doing a biopsy, which we wouldn't do. So, no real information there.

One other oddity today, Mandy's right pupil is smaller than the left right now, well all day today, actually. Odd, following yesterday's possible concern about lack of response of that same optic nerve. The right is also the side on which the optic glioma is the largest. So, because I am me, and paranoid and made of crazy, I am worried about this. They did dilate her pupils yesterday, so it could be leftover from that. I truly doubt anything else could escalate quite that quickly, but, like I said, I am made of crazy. So, I called her neuro-oncologist and left a message about it since we didn't see her at clinic today. Like I said, I am sure it is nothing. But, I prefer to bring Doctors into my particular brand of neurosis, so I have company.

Her blood work was all good today and chemo came and went with out a hitch. She is sleeping it off right now.

So, for the most part, very good news today. The rest? Well, we will just cross those bridges when we come to them.

For now, I am shedding my grump of yesterday and any uncertainty of today and cloaking myself in the good of today, cause there was a lot of it. Mandy has not stopped smiling and is feeling and acting great.

Geez, crazy much?

Ok, seriously. I was just about to hit publish on the above post. The phone rang from the clinic. Apparently, her neuro-oncologist called back and wants to do a CT to look at the ventricles. Ok. That caught me totally off guard. I didn't get to speak with the Doc. So, I'm not sure if it was because of the different sizes of pupils today, but I would assume so. I am sure they are fine. If it was fine two weeks ago at scans, I am sure it is fine now. They will call to schedule that tomorrow.

I'm going to bed.

Love to all~


Sarah Smith Nessel said...

What great news! You should celebrate! Take Mandy out for whatever dish that is that she loves so much at Carrabba's!

Andrea Cook said...

Fabulous news!

Wonderful news!

Love it!

Live in the present, it is a gift!

Hugs of love, Andrea