Saturday, May 20, 2006

[Photo: Pituitary tumor guru and craniopharyngioma expert, Dr. Laws at UVA. Received his opinion today in the mail. He supports our current course of action. Read below.]

Good morning at home, not a great day for Mike. I went to the farmer's market with Baxter, Heide and Hazel in the morning, and fed Bax lunch at home. He was a joy as usual. Total goofball, actually, just the way I like it. Annie, Bax's favorite red-headed sitter, came over to hang with Bax for a few hours so I could go to the hospital.

When I got there, Mike was in a chair quite slumped over to his left. More so than usual. I've been noticing this slump progress over the last couple of weeks. He looks weaker on the left side than the right. This makes sense since the cyst is on the side is pressing into the right side of the brain and that's how all that stuff is wired. He had some tremors in his left arm, too. He was in good spirits, though. Made a few jokes and reponded quite pleasantly in coversation wth me and Kelly and Diane who came in to visit.

Mike's nurse Suzette was great today. I had a bit of a breakdown and she and Cindy (from cardiology) let me cry on their shoulders and even cried a bit themselves. I wasn't comfortable with the change in Mike's condition. It even looked as though his face was slightly droopy on the left side. Suzette said she noticed it and pointed it out to the doctors this morning, but they didn't seem concerned. Since I, too, was worried, Suzette paged the resident.

Surprisingly, the resident was in the room in like 15 minutes (quick for a weekend - compared to Gibbon, anyway), and did a brief strength test on Mike - had him hold his arms straight out in front of him. His left arm was about 6 inches below the right and falling. The doc ordered a CT scan and Mike was wheeled down to CT within minutes. The CT results came back within the hour and the doc said no significant changes could be found between today and a few days ago. He did call doctor Evans, though, and said that Andrews was going to be in the building tomorrow morning and would check Mike out. The resident said it is possible that they may need to do the cyst drain early if these things are really causing Mike problems.

In the meantime, Mike's urinary catheter fell out - maybe that's the universe's way of getting Mike to use the bathroom on his own. Suzette said we'll use it as an opportunity to see how Mike does without it. If it's a problem, we can use an external (Texas?) catheter that is far less invasive.

Sodium status today: TOO LOW. G*ddamn sodium. 125. They withheld DDAVP today so we'll see where tomorrow brings us.

Finally, I heard back from Dr. Laws at UVA. Very thoughtful, concise and kind letter. It reads as follows (I have emphasized the most important observations with bold font. They weren't bold in the original.)

Dear Mrs. Young:

I was certainly sorry to learn about the difficulties that Michael Young had encountered with his treatment for craniopharyngioma. I have gone over the records and MRI studies, the most pertinent of which is the most recent one dated may 10, 2006. As you know there continues to be a very large residual solid and cystic craniopharyngioma that extends up into the third ventricle. It does appear that there may have been some damage to the midbrain in the course of his treatment and it cerainly seemed appropriate that he had the shunt placed.

All things considered, I would fully support the current plan of stabilizing the situation and then attempting to drain the cystic portion of the tumor which is in fact responsible, I believe, for many of the current problems. I don't think any other kind of surgey would be appropriate at the moment, especially considering that it was difficult to reach and to remove the tumor even using a craniotomy. I will be happy to review things as they progress and hope that ou will see some significant improvement. Please keep us posted.

With all best wishes,

Edward Laws

So, he, too, believes the bulk of Mike's current problem is the cysts - not necessarily the solid component. I feel a renewed sense of confidence in our plan.

Won't it be something to get Michael back? If he thought I was overbearing before... you just wait.


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