July 29, 2014

As I went to (finally) post an update, I peeked at a calendar to check the date (I barely know what day of the week it is, much less the actual date anymore), and I realized that today marks the 6th anniversary of Ken's first brain surgery. One the one hand, it seems like yesterday...many of the details remain so vivid for me... on the other hand, it seems like a million years (two brain surgeries, two clinical trials, radiation, and many, many chemos) ago. July 29, 2008 - two days before our son's first birthday - marked our first step on this journey. Anyhow...an update on his current condition is due. Ken was released from the hospital on Wednesday, July 16th. Prior to his release, we discussed at length what his options were for his treatment and overall well being. Any improvement that was sought in treating him with Avastin has already been realized. He remains essentially paralysed on his left side. His cognitive functioning is somewhat impaired as well. In light of this, Ken has made the decision to discontinue chemotherapy. He had one last treatment of Avastin on the 16th, and then was moved into an inpatient rehab facility. There, he is much, much closer to home, and has been having daily (during the week) physical therapy, occupational therapy, and speech therapy. He has been working on getting from bed to a wheelchair without the use if a lift, and trying to regain some muscle strength. Once he is done with his therapy and is in his wheelchair, I am able to take him outside where he can enjoy some fresh air and feel the warm sun. The grounds have a beautiful pond that he likes to look over, and sometimes I am able to bring the kids over to enjoy being outside with him. He seems pretty happy to be there, and not at the hospital anymore. He has a nice, private room, the nurses seem to take good care of him, and, believe it or not, he likes the food! Everyone has been asking about the kids...they are doing as well as can be expected, I suppose. It has been difficult for them, to say the least. They seem to be getting somewhat accustomed to Ken being out of the house, although at times they miss him terribly. We are all just taking things day by day, and trying to be grateful for the moments that we have and the love that surrounds us. I truly believe that we live in the most amazing community and are surrounded each day by true examples of bravery and resiliency. I cannot begin to thank the friends and neighbors who have taken care of my kids, grocery shopped, delivered meals (thanks to Lori's Meal Train I have not had to cook a meal in six weeks! Seriously, not one!) filled my freezer, shown up with coffee and "just listened". More importantly, the friends and family who have taken the time to visit with Ken, and especially those who have arranged to sit with him and be there when I cannot. It means the world to both of us, and I cannot adequately express the gratitude that we both feel. Feel free to call or send me a message if you would like his address...he does enjoy having visitors! He has an oncology appointment tomorrow, so I will try to update if there is anything new. Good night, and as Ken would say, "much love".