2007 May 8 Update

Hello to all. Sorry for my lack of posts lately. Just haven't felt like it, honestly. Here is what is going on here at Stanford:

Brian started the Arsenic TriOxide drip last Friday with Cyberknife to follow. He had three days of this - Friday, Monday and today, Tuesday, May 8. The side effects seemed to be cumulative - he was VERY tired today, Tuesday, and pretty darned tired yesterday, Monday. He did not get sick or have any sort of other terrible reaction. Just fatigue. So, for the last three week-days, he has been taken to the clinical research center for a 2 hour drip of the ATO and then wheeled to Cyberknife for about a one hour radiation treatment. Then he gets wheeled back to his room, has some lunch and then has three solid hours of rehab from 1 to 4. He has had to cut a few of his therapies short due to fatigue during this. Other than that, everything is tolerated quite well. One of the good things about taking part in this ATO study/protocol is that we have to send our scans back to this team here for their review for the next year as part of the requirements. So, the doctors here will still be reviewing Brian's case regardless for the next year.

We have all of Brian's major medical records faxed or in hand right now for our departure, which by the way, is TOMORROW!!!!!!!!!!!!!!!!!! May 9. We arrived here on April 18, if you can believe it!!! We are ALL SO READY TO GET OUT OF HERE!!! You can't even begin to know. Even Jan, who spent over half of the last 3 weeks admitted herself said today as we were driving past the beautiful gardens in the wonderful warm sunshine, "yup, I won't miss it at all." I had to laugh because she is so eternally positive and optimistic. To hear the faintest bit of resentment or sarcasm in her voice regarding the trip lets you know that it is TIME TO GO! The kids will be coming with Memaw and Papa on Friday afternoon/evening some time.

Brian's rehab continues to progress. He is walking with a single point cane instead of a 4 point cane now. He can even take some supervised steps with no cane. He is gaining more control over his arm and hand, but there is a long way to go. His speech comes along better each day, but it is worse when tired or when rushed. We have practiced more home exercises - stairs, curbs, cars, bathroom without railings, etc. and feel a bit more prepared for homelife. However, nothing can prepare you for homelife with kids and an active lifestyle. They have kitchens and all kinds of gadgets to play with here, but there are no simulated children climbing on you or getting in your way or leaving their toys out on the floor. So, real life will pave the way in the next few weeks.

Brian starts rehab in Peoria on Friday. He has an oncologist appointment on Monday. Right now, he will continue with outpatient rehab, for I would guess, quite some time. He will probably start chemo next week. They are recommending here (and we think Brian's local oncologist agrees) to start with Temodar. This is a chemo Brian was taking in the past and he tolerated it well and it did well for him. There is a concern that his pathology may have a tolerance to it due to having tried it in the past and the growth happening anyway, but the theory is that he has not had any chemo for 5-1/2 years, so let's try this first and see how it goes. The biggest concern going into this is that due to the cyberknife, Brian is almost surely going to have changes in his scans. The cyberknife is the high dose radiation to the the concentrated target points in the brain. So, the issue is that when the cyberknife starts to show its effects, the scans are going to change - the enhancement will probably look larger. This can be from the radiation or it can be from growing cancer (I hate that word, but I hate the T word more (tumor)). So, it will be hard to differentiate and hard to know whether or not to change treatments. So, we will work closely with the team here to get the correct scans and have additional eyes for the interpretation of the scans.

Brian's attitude remains positive. He is so ready to get out of here. He wants to see his kids. We did manage to get a pass to leave this past weekend. We went out to dinner on Saturday night and out to lunch on Sunday afternoon. He walked in and out of both those places from the car. Then we went to a beautiful outdoor shopping mall and he wheeled himself around there for a while, too. It was just nice to get outside. It was a beautiful weekend. I managed to get more running in, finished a book, got hooked on Sudoku and spent lots of time with Brian. He is started to get ornery with me, so he must be feeling better and must be having cabin fever.

That is about it from here for now. Thanks for all your prayers and support. Here is our contact information as of tomorrow. This is Ed and Jan's address until we get back into our house sometime in July:


We will get hooked up with cell phones and here is our email address until we get our own service:



Some of you have emailed me a few times, but I haven't really had time to reply yet. I will when we get more settled. Keep posting comments here, too, we like to read them.

KEEP BELIEVING!

Brian, Angie, Gavin, Grant O'Neill