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2007 April 25 ONeill Update

Posted Jan 15 2009 7:57pm

It's Angie again. This time from the hospital. I am spending the night with Brian again tonight. I am not spell checking this, so it may be pretty bad.

Brian is progressing pretty well. His speech seems to get a little better each day, but nothing near the progress he made the first few days of therapy. It is slow going from here. Same thing with his leg/foot and arm now. It is slow going. He moves it and gets it a bit stronger each day. The hand has me most concerned because the fingers still have not spread out or stretched out on their own. However, he makes progress each day. He can get around the wheelchair quite well. He is shaky on his feet due to his right calf and foot not working properly. However, today, he walked the length of part of the corridor with a handrail - shaky and weak and slow, but he did it. Then he even walked part of the way with just a cane. So, the goal is to have him able to do stairs as stairs is not an option no matter where we go to at least get into the house. He is doing well, but he is frustrated since he wants it to go faster now. The swelling in the brain is probably down now, so the stuff that was going to come back quickly is back, the rest is true slow rehabilitation. They can't promise or guess what he will get back due to not knowing what is a result of resection versus just what needs to be rewired.

Anyway, as far as treatments. We are entering a clinical trial called Arsenic Tri -oxide ( ATO ) with cyber knife. They are treating two small areas left behind with the cyber knife. The ATO is supposed to act as a radio-enhancer making the radio-surgery more effective. It is an early trial - Brian is only 12 of 12 having it in this phase. The good thing about the trial is that ATO is FDA approved for leukemia, so it is used on people and has been for a while. However, he will get way less than the leukemia patient would. So, it is not like he is only 12 of 12 people who have ever had this at all. Just in conjunction with the radio-surgery. The radio-surgery is something we were going to do anyway, so we thought, why not throw more at it. Dr. Edwards thinks it is good to throw anything at it that it hasn't already seen and has maybe built up an immunity to. So, the planning phase is going on now - scans and the doctors have to do some programming, then it will be administered on Wed-Thursday May 2-5. It consists of a 2 hour drip of the ATO followed by cyberknife. He will still have rehab, too. Side effects - fatigue, headache, nausea and a possible QT extension on his EKG which has happened with other patients, but corrected with some electrolyte boosts - magnesium, potassium. We will follow with chemo when we return to Peoria.

Anyway, Jan is back in irregular rhythm. They keep saying she is challenging. They are giving her lots of stuff to keep her pulse down, but they are also giving her Lasix (a diuretic) to keep the fluid from building up. Frustrating on that end, too.

I am going back to Edmonton tomorrow for a couple of days to tie up loose ends and see my kids that I miss so bad I can hardly stand it. I am going to close things out as much as possible, see some friends, say good-byes and then head back here on Tuesday for Brian's treatments the next week. I don't know how long we will be here. We will probably let him finish his in=patient rehab here at this point assuming it is not one more week past next week. My mom and Dad are taking the boys home NEXT weekend (first in May) with them until we get Brian settled. I have to spend the weekend explaining some of what is going on and some of how Brian is so they are slightly prepared. Brian is afraid he will scare them.

So that is all from here. Have to go, missing "The Office".


Angie, Brian, Gavin and Grant.

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