posted by Mary Lello, Monday, January 11, 2010, 4:45 AM
We are settling back into our routine. It did seem to take all of last week for Jim to recover from our trip and to get back into the schedule with appointments and care takers coming in for their weekly time with Jim. I think one reason I believe in miracles is the fact that all these friends who have been coming every week on a regular schedule have been doing it for a year now! Each one of them tells me how good it is to have that time with Jim. God, we are so blessed!
We went for the avastin infusion last Friday (1/8/09) and saw Dr. Weisburgs PA, Dixie. She informed us that Dr. Wen from Dana Farber had written them and spoke of his recommendations; to stay on avastin and NOT add in the chemo, CPT11, at this time. The tumor is not showing signs of change and thus we don't need to add the toxin of chemo at this time. We do need to stay vigilant about any changes we may see in Jim, however slight, since any change in behavior could be a sign of the cancer.
This can be hard for me sometimes and why I'm glad there are so man others who see Jim every week and can help me notice any change. There always seems to be more then one variable and so it can be difficult to know ... is that a change?
We made appointments for the avastin treatments through to Febuary. The woman who does this in Weisburg's office said "oh, hey, have you seen my screen saver?" She turned her computer screen to us and there was Jim's picture of the little boy in the Dominican Republic playing in that blue water with the white boat on the beach. I was so surprised! She said Dr. Weisburg has been telling the entire office that they need to check out Jim's website, saying "there are some incredibly beautiful pictures there!" I felt SO proud. But I also got the sense that this office felt proud of Jim! AND I really loved the fact that they are beginning to get a better sense of who he is, the talent that he is and the miracle that he is!
David Reese, our physical therapist extraordinaire, came over to the house this past Saturday. He wanted to see the "Jim-nasium" that we have set up here. Jerry Sanders also joined us so that he and Dave could share all that they do as practitioners and get to meet each other. It's pretty amazing that these guys did this on their day off! He said something at the end of the hour that just blew me away. Dave was explaining how the body responds with this kind of brain stem tumor and how he's seen this in other folks he's worked with over the years. But what he has never seen is how much Jim is capable of doing with what he's got! Dave said it's really miraculous what Jim is able to do and that it just tells him what an incredible athlete Jim is. Dave said, and I love this, "I'm in on this dance. There is NO WAY I'm leaving this floor while this dance is happening!"
I found this guy, Dave, by walking into that office on Rt.1 in Falmouth because it was convenient. CONVENIENT! And what a miracle he has proven to be for us. How quickly he has fallen into this circle of love and become a piece that helps make it complete.
It's feeling good to be home. It's feeling good to reconnect with all these people who are instrumental in our lives now. Who I'm just not sure how I would survive all this without. And I also know that we might not have this home without the grace of so many of you helping us financially. This is NOT an exaggeration. It is just miraculous how you have all created this webb that connects us and supports us in so many, many ways.
Once again I am watching this beautiful waning moon out my window. Aware of the miracle that is that gorgeous moon, that is this breath, that is Jim, that is each and every one of us. And although I don't know where this strange trip is going to take Jim and I on any given day I am learning to trust that miracles are possible and happen daily.
Thank you all. We so love you,