Long, hard week

posted by Mary Lello, Thursday, April 16, 2009, 9:30 PM

It's been a long, hard week as you can probably guess by how our Monday began the week! It's Thursday and things really haven't been getting a whole lot better. We went to Dana Farber today. I was not going down there with the naive sense that Dr. Wen was going to have our magic pill, or clinical trial or answers for us right now - and basically, he didn't - but we did gain some information that just feels hopeful. Besides, I love just being in the presence of this man as he is THE MAN for brain tumors at DF and he is also so incredibly compassionate, serene and knowledgeable. He has a fantastic aura. He never talks with a pompous attitude but will answer every question with patience, clarity and integrity for those sitting in front of him. Including Jim, who was so exhausted by the time we saw Dr. Wen that he could not answer any questions nor do any of the physical tests asked of him. But still Dr. Wen spoke to him intelligently and with understanding that the affects of this tumor is NOT the man that he sees before him. That was wonderful to see!

Basically Dr. Wen told us there are no clinical trails that will serve Jim right now but that we need to get on Avastin and he will recommend this to Dr. Weisburg (who is thinking this for us also) but the blood clot may complicate things for us right now as coumadin does not work well with Avastin. Still, we have time to get on top of the blood clot and then get on Avastin. His calm demeanor was wonderful to feel as he basically said Jim is doing really well right now, radiation did it's job, chemo did it's job and so he is responding really well to conventional treatments which is a good, good thing. We do not need to panic or try to rush into the next thing as there is some time - we are still ahead of this tumor right now! - and it is far better to proceed with caution then to try to jump too quickly into new treatments just for the sake of treating the tumor. This was reassuring to hear. Dr. Wen also reminded us that Dr. Tracy Weisburg is "very good" and we are in good hands with her - which I have known from the beginning - so we can trust her and work with her for what shall come next.

Today was a very emotional day for me but other days I am able to sit back and try and find the humor in all this. Jim Daniels has always been the master of being able to laugh at himself and at any given situation. But I recently told Jim one of the things I miss most - besides our entire life - is how I have not heard his laugh since this all began. I will crack jokes and he will smile with this new, odd lopped sided smile and his shoulders will shake ... and this is how he laughs now. When I pointed this out to him he told me "THIS needs to change".

So our entourage that was headed to Dana Farber (Todd, our ever faithful driver and MaryMargaret) all journeyed to Scarborough first for Jim to get this shot he needed this a.m and then we would all just keep going south. He's not doing real well this week so we put him in a wheel chair to take him down to the oncology office. There is a long hall that is all tiled and there was not a single soul in it this morning so I leaned over and whispered into Jim's ear "are you ready?". As he gave me a curious look I just grabbed the chair and started running down the hall as fast as I could push that chair ... and I heard Jim Daniels laugh ... for the first time in 4 months, I heard his laugh!!!!!! And this was one of the most joyous moments for me since before all this shit hit this fan.

And this was how our day began .... and although it didn't end on quite the same note it was a good beginning. I'll take it and hold onto this one.

Loving you all back!!

Mary