Friday, April 21, 2006 - afternoon

[Photo: Andre and Marianne's wedding in September 2004 with a whole gaggle of our dear dear amazing friends. I'm hiding in the back with a giant 7 month pregnant Baxter belly.]

To the amazing anonymous person who left $30 and a picture of me at cafe mocha on 10th street (where I blog from in the afternoons) - you rock. What a heart-warming surprise and a great great gift. I'm sitting here right now drinking my free coffee.

Mike is looking good today. Alert, good mood, good appetite, though he really was convinced he had already eaten lunch (he hadn't). The first impression Lonia and I got going in today was a good one. Our friend Mario Fraboni was sitting outside the elevator on his cell phone. He had already been in to see Mike in his room and was making a quick call before going back in to spend some time visiting. When Lonia and I got into Mike's room he said, "Hi! Fraboni's here. He just stepped out but he'll be back." And Mario had been gone from the room for a couple of minutes at least. Very very good stuff.

Here's a funny conversation we had with Mr. Young today that might make you laugh:

“Mike, do you know how old you are?” I asked him.


Egads, no!!

“Do you feel 47?”

“I don’t know. Maybe.”

“Well, what year were you born?”


“19…38?” he guessed.


"Really?" he turned to face me, surprised.

“Sweetie, I think you’re thinking of your mom’s birthday.”

“Maybe you’re right.”

Finally, we told him he’s 38 and was born in 1967.

“How old am I, Mike." I decided to try the logical approach.

Fraboni warned him, “It’s a trap, Mike! Don't answer that!"

Mike laughed, “Ummm,” he makes a face like he realized he’s been trapped by his wife. “Well… you look like you’re….”

We were all laughing at his very wise approach to the question.

“…in your early to mid-thirties?" He said shrugging and smiling sheepishly as though that was actually a compliment.

“No! No-no! Here’s a hint, Mike. I’m 8 years younger than you.”

“So…” He’s really hesitating now, “You’re in your mid to late thirties.”

“No! I’m 30. Just turned 30. So how old are you?”


-sigh -

Another tidbit:

Fraboni asked Mike if he remembered going to the monster truck show years ago.


I was doubtful that Mike actually remembered and asked I Fraboni who went. Fraboni replied, “Me ...and ... Kevin…”

In between bites of his lunch Mike looks up and says, “and Tom.”

Which was true.

Long-term memory (stuff from before like a year ago) is still really really good. It makes me so happy to see it. On Fraboni's way out the door, Mike shook his hand goodbye and Mike said “ber.”

Fraboni lit up. “That’s right! Ber!”

“Mike, what’s ber?” I asked.

“It’s Fraboni for ‘bye,’” he replied.

By the look on Fraboni's face, I could tell this was a good good thing.

Later this afternoon: Met with a speech pathologist while Mike was sleeping. She said that the memory deficits we witness might also be frontal lobe problems as they may result from a lack of attention paid to information when he recieves it. That actually makes me feel better because the fluid collection in the frontal lobe is something that is likely fixable - even if it's brewing an infection. If, however, the short-term memory loss is a direct result of the tumor pressing on the fornix (in the midbrain region connecting the hippocampus and hypothalamus where the tumor is) then these deficits might be permanent.

Talked to Dr. Evans this afternoon by phone. He was at the airport with his kids on his way to a national conference. Dr. Evans said our immediate goal is to monitor the size and make-up of the fluid collection in the right frontal lobe. Apparently there is fluid there both on top of and underneath the skull. The cultures that will determine whether or not this area is infected with be done in the next couple of days. Evans is still hoping to get mike right into radiation in a few days, assuming all infection is cleared out.

I sort of forced Dr. Evans into a box and asked him for his hunch regarding Mike's neurological problems improving. He thinks the impulsive, agitated, and tactile behaviors are likely going to be resolved as they are more indicative of frontal lobe problems. He isn't as optimistic about the short-term memory loss. That is such a classic component of the fornix's functions that it would be very logical for that to be a permanent problem given the location of the tumor. That being said, the speech pathologist's point about the frontal lobe being responsible for attention to information at the time of information encoding into memory is encouraging.

I mentioned a sit-down family meeting with Dr. Evans and he seemed very open to it. He suggested that we let the "dust settle" a bit in terms of this frontal lobe collection. That makes sense to me. No sense planning ahead without an understanding of the acute situation at hand.

Gave Mike a nice shave today, cleaned him up and got him to brush and floss his teeth.

I noticed after about 3 minutes he was still brushing the bottom teeth. "What about the top teeth?" I asked. "I am brushing the top," he said. oy yoy yoy. Flossing was another minor debacle. His vision is so bad and he's got so many monitors attached to him that he kept dropping the floss and trying to floss with the wire from one of his monitors. We got through it, but man -- these are the kinds of things that no one thinks about. Anyway, he felt nice and refreshed when it was all done.

And you know what? At 3 pm I asked Mike who had visited today and you know what he said?

"Mario Fraboni?"

And Mario had left about 2 hours prior. I almost peed myself with joy.

Mike, we know you're in there. Come on out and play.


Peter said...

Last night Mike knew he was 38. We talked about that. Last night I asked Mike, who is just 4 days older than I, how old we were (genuine question from me -- perhaps I should see Dr. Georgia), because I was teasing Kevin about how old he is relative to us. I may have asked Mike whether we were 39 yet, or I may have simply asked him how old we were. Either way, he said "38." He was right last night!

The Brain said...

I asked him his age again this afternoon and he knew right away. The info that's accessible to him varies at any given moment.

Anonymous said...

Hi Danna,

Just curious if the speech-pathologist suggested any strategies that would help with the day to day short-term memory. It's been a long time since I worked with adults (as I now with many adorable, but frequently sick preschoolers)but one thing that we used to use were memory books that would have pictures (polaroids) or notes/etc. about who was there that day, what they did, etc. Also, out of curiousity since Mike's short term memory is affected, have they indicated if it is just auditory memory or does it affect all modalities that he uses to store information (e.g. visual, tactile, kinesthetic, etc.)or even things that he hears musically. The Elmo comment you made the other day made me think of it, as some of the kids I have worked with rememer things better when it relates to music. Please pass on our love and well wishes!

Jenna, Ed, Mason & Odin

Anonymous said...

okay... let's be honest. what % of grown adults floss on a regular basis anyway? i'm the daughter of a dentist and i can barely hold onto the freakin' string!

The Brain said...

Great info, Jenna. We meet with the speech pathologist again on Tuesday and I'll talk to her about it then. If Mike is as good and alert as he was today again in the days to come, I definitely think there is some way to get him to acquire and hold on to information. We just need to find out how. x0x0x0

Anonymous said...


I read your article in Citypaper. My son lost a friend this summer and wrote a song about it that you might find comforting, if you want to listen. It is called "Taken" and can be found at http://www.myspace.com/davepatten

Good luck and best wishes,