Saturday, April 22, 2006 - evening

[Photos: Hall and Oates and a rubber glove. Just what they look like. Duh. Why Hall and Oates and a rubber gove? Read on.]

On the way into the hospital today, I got a call from Mike’s nurse, Meredith, letting me know that Mike’s not having a great day. He started acting a little impulsive and restless late morning and she was sweet enough to call me to give me a heads up. When we (Lonia and I) arrived, they had him restrained with a vest in his bed just so that he would stop trying to get out of bed. Again – mike doesn’t do this stuff aggressively or to be annoying – he just doesn’t remember that he’s hooked up to a gazillion monitors and that he’s not supposed to get up.

Meredith also told me that they had been instructed to skip Mike’s 6 am and 1 pm doses of DDAVP because his sodium has been too low (131-132). Freaking sodium. Decide what you’re doing, will you? I didn’t love the idea of skipping Mike’s DDAVP (which is the medicine they give him to help him pee less and keep his sodium from spiking). Last time they decided to skip it (due to low sodium) it quickly spiked up to too high again.

The nurses today are wonderful. They were sweet enough to stop Dr. Andrews while he was in the NICU to ask if he had time to talk to me. Dr. Andrews is the chair of the department and has been working with Dr. Evans on Mike’s case from the beginning. (Side note: Josh R. got in contact with all the neurologists he knows to ask for a recommendation for the top person in the Philly area to handle Mike’s particular case and they told him Dr. Andrews. He’s been on the case from the beginning, but Evans had more experience with the endoscopic transphenoidal approach, which is what Mike had in November, so Evans sort of took the lead by default).

Anyway, Andrews told me that they are taking things hour to hour and day to day with Mike. The sodium has yet to stabilize (and he said that withholding DDAVP is a wise idea and they will closely monitor sodium to make sure it doesn’t spike right away). They are also trying to get a handle on the fevers he’s been having and trying to make sure they’re not due to an infection in the fluid collection that has formed in the right frontal lobe. Andrews doesn’t think it is very likely that Mike has an infection. I wish he did, because that’s at least fixable. But, the fevers could also be a direct result of the tumor’s pressure on the hypothalamus which monitors body temperature.

I told Andrews that I wanted some understanding of whether or not I should expect to get Mike back. I’ve been trying to take it day by day but at some point I want to be equipped to plan for the future. “Could the neurological issues be due to the collection in the frontal lobe?” I asked.

“Yes, they could certainly be worsened by that pressure,” he then paused and took a breath, “But, have you seen his latest scans?”

Well, yes I had and I knew what he was getting at. Mike has a giant tumor in his head and the cystic component is getting bigger and pressing right into the fornix.

“Yes, I’ve seen it. But no one’s told me if the problems we witness with Mike’s cognition are due to that or to the other ancillary issues like the collection, or the fever, or the sodium…”

He told me that his is the most aggressive craniopharyngioma he has ever encountered. It’s pressing right up into the hypothalamus. He said he doesn’t think that all of Mike’s neurological issues are going to be resolved. But he also doesn’t think that Mike’s not going to improve from where he is right now.

I was crying as I talked to Dr. Andrews and he was really kind in his tone and approach. I told him that Mike in real life is so brilliant and funny and makes our household function right and I needed to know if I was going to get him back. I was speaking quietly, sitting at the foot of Mike’s bed as Andrews stood above us. Mike was watching and listening the whole time we spoke, but didn’t utter a word. When I began crying, I felt as Mike rubbed my back with his foot under the blanket. I looked over at him.

“I’ll be ok, smoosher.”

I looked up at Dr. Andrews who seemed moved by Mike’s gesture to me. “I know what you want to know, “ he said. “You want to know what kind of autonomy Mike will have. And we just don’t know right now.” He paused. “How many kids do you have? Two?”

“Just one, Baxter. But he’s 16 months, so is as much work as 2.”

He sighed and rubbed at his forehead.

I asked him about the possibility of injecting bleomycin into the cyst (a toxic treatment for cancerous tumors). He said that would be the equivalent of starting a forest fire to put out a smaller one. Since the larger component of Mike’s growth is a tumor which would not be reduced in size by bleomycin, then it’s not worth the risk it would pose to other vital structures.

He then said that they have entertained every possible option in Michael’s case. The most reasonable step at this point is to start radiation therapy. There is one thing they could do at the time of the stereotactic radiation treatment to reduce the size of the cyst that’s growing on the top of the tumor. It might be possible to do a one-time drain of the cystic component with a needle at the time of radiation therapy. This has the possibility of reducing the cyst and “freezing” it at that reduced size with the radiation. The only other remote possibility is a shunt implanted to drain the cyst when necessary (like he had implanted in late Jan-early Feb that gave him so much trouble and had some infection brewing). But since it didn’t seem to agree with Mike last time, I think they’re shying away from that.

Today is a tricky one with Mike. He’s very tactile again, pulling at blankets, pulling up his gown, trying to get up over and over as you’re telling him not to. I told him for the 100th time he was not allowed to pull off his oxygen monitor from his finger or they were probably going to tie his wrists down to his sides again.

“That’s no fun.”

“So why are you doing it?”

“Because I’m crazy.”

“No, seriously, Mike…. Why are you pulling at that?”

“Because I’m crazy.”


I told one of our favorite nurses, Cheryl, that mike was super-tactile and messing with everything around him and would she have any paper he could tear up. She said, “Way better than that…” and went into the nurse’s supply closet and got some gauze, some stretchy stuff, a rubber glove blown up and tied, and some other random things. Mike was psyched. I told him I could tell he was bored and wanted something to do with his hands and he agreed. He occupied himself for a long while with these random objects. In addition to actual neurological issues I think the poor guy is just stir crazy. He’s been in the hospital (same room, same bed) for almost three weeks straight. And before that he was in here for 2 weeks straight with only a 3-day trip home in between.



This evening I asked Mike if it would infantilize him to bring in some of Bax’s baby toys for him to occupy his hands. Then I stopped and said to whomever was around (Mike, nurses, Susan), “Wait, is that the right word? What does infantilize even mean?” To which Mike replied, “To make one feel as though he is an infant.”

Ok, then.

“Well, would it infantilize you to bring those toys?”

And then he honestly said with enthusiasm, “No. That would be great.”


I thought I’d help him get some energy out by playing some music on the powerbook (I brought my good speakers in a few weeks back). I asked him if he had any requests and he said confidently, “Funky Winkerbee.”

“What kind of music is that?


Is that another discmakers client, you DMers? Or is Mike just super geniusy creative?

Then I asked him about what he wanted to listen to and he said Hall and Oates – to which he knew all of the lyrics of every song.

With “Family Man” playing in the background, I asked Mike if he knew where he was. “L.A.” I told him he was in a hospital room at Thomas Jefferson and asked if he knew what part of him they were fixing. He replied calmly, “My soul.”

The nurse and I looked at each other wide-eyed.

I don't know. I think Mike's soul is just fine. It's his freaking brain that needs fixing.


Anonymous said...

Just a thought...

Would crayons, colored pencils, heavy paper, poster board, chalk board, chalk ...that sort of thing be a good or bad idea?

Thought he could doodle.

The Brain said...

Unfortunately, his vision is so bad and he's not great at holding onto small items with precision. I'll try it with him with stuff we have on hand to see if it would work. x0x0d

JNC said...


What about reading to Mike? Short stories, brief essays, Dave Barry columns? If you think this might be useful or just frustrating? let me know and I'll dig out all my Dave Barry books and bring them over.
love from here to you and Mike,

The Rosses in NH said...

Danna, you are doing so well dealling with all this. Such creative ways to cope. It is amazing how Mike can be so lucid at times. That must give hope. Love to you both.

The Brain said...

Good idea, Joe. I've also got some short David Sedaris stories on CD that Tresa gave us. I'll ask him today if he's up to hearing stories.

Jenny S-G said...

Hey Danna,

The uncertainty is so frustrating, isn't it? We get so used to being able to plan for the future; we generally feel that we have some control over what's to come in the days and weeks ahead. You've been living with uncertainty now for quite a while, and it gets really freakin' old!

The worst part about the medical profession is that they're not good at giving certainty. I mean, they can't, but they also don't want to.

It sounds like Dr. Andrews and Dr. Evans are doing their best, but you are right to stay proactive, to think of solutions, to push them to pay attention to patterns that you see - like your concern about Mike's sodium. You are with Mike far more than they are - you are his advocate.

Stay strong, Danna, and creative.

Thinking of you every day,

Anonymous said...

Perhaps he's thinking of Funky Winkerbean?


Deke Young said...

Step 1 - Go to a Cracker Barrel
Step 2 - Pay $30 - $45 on an Audio Book on CD-ROM
Step 3 - Listen to the CD-ROM, if you like it, finish the CD-ROM
Step 3b - If you do not like it, return it to Cracker Barrel.
Step 4 - Cracker Barrel will credit you the price you paid for the first Audio Book CD-ROM, minus about $5 a week fee since you bought the first one. This means you can listen to as many as you like for effectively $5 a week.

Victoria and I use this approach on our long drives in the car, but it works at home as well.

The best part is trading in a loser without suffering through the whole thing. My advice is do not buy River of Ruin by Jack DuBrul if you are offended by bad physics and miraculous coincident.