Monday, March 9, 2009

Unsettling Developments

When I was a little girl, I was not terribly worried about the monster under the bed. Really. In all honesty, I was certainly not above invoking the "there's a monster under my bed" defense to explain why I was sneaking out of bed for the eleventy bazillionth time.

But the worst monster ... HE was in the closet. That one was so hideous it could only come out under the dark cover of night. That one scared me to the point of bedwet ... well, that's TMI. Let's just say it was scary.

However, and lucky for me: My particular closet dwelling monster must not have been blessed with opposable thumbs.

Because as long as my closet door was closed it was all good. It was not able to open the closet.

Somewhere over the last 30 years, alas, the monster has evolved. Maybe they're not completely thumbs yet, maybe they are just little stumpy things on their way to opposableness. But he's figured out a way to nudge the door open. I wish I could put the monster back in the closet and close the door on his stupid little semi-opposable stumpy things. But, I can't.

Mandy had her regularly scheduled every other month MRI on Thursday. The results were somewhat less than what we hoped for.

First, the good news, the optic glioma, is stable, both in size and enhancement. That is good news overall.

However, the lesion in the left parietal lobe that has been concerning us for the last several months is enhancing more than it was 8 weeks ago. That is not good news overall.

We are not yet sure what the official plan will be. It may be to just stay the course. Mandy's neuro-oncologist is re-presenting the case to the tumor board this week to determine if there need to be alterations to the plan.

Mandy has been having some odd symptoms that are adding to our concern. She was diagnosed with seizures once before, but has since had a normal EEG. But back at the time she was having these partial focal seizures, one of the red flags was sleep disturbances. She has started sleep walking and frequently waking. Given the parietal lobe lesion's new enhancement and location the doctors are concerned she may be having seizures.

So she will have a 72-hour ambulatory EEG. She will spend her weekend with 20 or so electrodes cemented to her head. The electrodes are wired to a box monitoring her brain waves. A video camera will watch her as she sleeps to help match her sleep patterns to those brain waves.

It could be nothing. It could be behavioral. It could be stress. But, given her history and the new developments, the possibility of something more sinister needs to be examined.

Ronnie is leaving for Canada on Saturday. The kids and I will be mostly on lockdown at home because 1) Mandy is very worried about people laughing at her all wired up for her EEG (though I assured her if anyone dared laugh at her, heaven help that person, because there would be a looooong line of people waiting to take him/her out); and 2) because the Ambulatory EEG contraption ain't really as ambulatory as the name would imply.

So, Wednesday I will take her in for chemo. Friday, I will take her to her neurologist to be hooked up to the EEG machine for the weekend. Then, Monday I will take her back to have the EEG taken off and wait anxiously for results. All the while, anxiously waiting to hear what the tumor board thinks and wants to do next.

We have a whole lot of anxious waiting going on right now.

Love to all~

5 comments:

Tyra said...

I pray that you all find peace amid the uncertainty. Hugs and love from the Damms to the sweet Willis family!

Sarah said...

We are thinking of you, too. And if anyone DARES ever make fun of Mandy, you give me a call! I will corner that person from 1,500 miles away. I am beginning to develop a talent for it (especially as it relates to neighborhood boys. I don't pull any punches on account of the punchee being young!).

Jenn VC said...

If anyone does make fun of Mandy, I will take them down. My love to you all

Andrea Cook said...

Yeah for stable! Yuck for enhancement. I'm so sorry for this new news. I'm sorry that Mandy has to go through the 72 hour EEG and that you all will be stuck inside all weekend. Throw a hat on her with a long wig - nobody will notice! We are praying for good results from the test and the tumor board.

COLE Prayer Team - www.colesfoundaiton.com

www.caringbridge.org/visit/rileycook

Hugs of love, Andrea

Dan said...

Can I be first on line to take care of the person who would dare laugh at my buddy the beautiful Princess Mandy?

I am praying for you and thinking of you every day.

Sending hugs,

Dan Cohen
North Miami Beach, FL
danco1968@hotmail.com