Sunday, June 29, 2014

June 29, 2014

Kenny is STILL in the hospital. I think that this is day 20! His condition has remained about the same...he still has no use of his left arm, and only partial use of his left leg. He also still has some facial paralysis on the left side. The goal has been to try to get him placed in an outpatient rehab facility, as he still needs 24 hour care. However, none of the rehabs are willing to take him, due to the fact that he is currently receiving chemotherapy. Apparently, they must assume all expenses associated with his care, and the Chemo is too expensive and would cut into their profit margin. There seems to still be some hope that he will be accepted into the hospital's own rehab program. So far he's been declined by them twice, but is supposed to be re-evaluated tomorrow. Fingers crossed!!! Meanwhile, he has only been able to work with the physical therapists on the oncology floor, and they are somewhat limited in what they can do with him because they lack the proper equipment. Thankfully, on Thursday and Friday, they were able to get him up to the orthopedics floor and work with him on the parallel bars. When he has the bars for leverage, he has been able to pull himself up to a standing position and hold himself there for about a minute at a time. At least this is some progress, because I feel like the longer he is in bed, the more his muscles will atrophy, and the less likely it is for him to be rehabilitated. There also seems to be some disagreement between all of the doctors over his steroids. The Doctors had put him on a high dosage of Decadron in an effort to control the swelling in his brain until the Avastin kicked in. Now that he has had two doses of Avastin, the Docs at Sloan Kettering feel that he should be tapering down to a lower dose of Decadron. The Docs in Danbury, however, don't want to lower the dose for fear that the swelling will come back...even though the Decadron may be responsible for muscle weakness and confusion, and other ugly side effects. I am agreeing with the experts at Sloan Kettering, and I don't feel that he's being given a fair shot at recovery when the Decadron may actually be adding to his problems. So hopefully, the steroid issue will be resolved soon. I just wanted to say a huge, heartfelt Thank You to everyone who has so generously offered their time to visit Ken in the hospital, and bring us beautiful meals, and help out watching the kids. I cannot express how grateful we all are for your love and support.

Thursday, June 19, 2014

June 19, 2014

Ken is still hospitalized for now. The weekend & beginning of the week were very tough, as he continued to decline. He had lost all of his left side, and was very tired and "out of it". However, the avastin & steroids seem to have kicked in, and he has improved dramatically. While still unable to get out of bed, he is now very alert and "with it", and now can puposefully move his left leg. The paralysis on the the left side of his face has improved tremendously, and he is able to feed himself. His sense of humor is returning as well, and he has been joking (flirting??) with his nurses. All good things!! I not sure when he will be released...as of now, they are saying that he will be here through the weekend and for his next dose of Avastin on Monday. Hoping for continued improvement in his mobility so he can come home!!

Saturday, June 14, 2014

June 14, 2014

Hello, everyone. We have had another crazy couple of weeks. Unfortunately, Ken's MRI on May 30th showed additional tumor growth. The docs wanted to start him back on Avastin as soon as possible, to try to control both swelling and tumor growth. We had to get clearance from the surgeon (originally he was to wait 6 weeks after his hernia surgery to start Avastin) and insurance approval, etc. In the meantime, his motor skills had continued to decline. Fortunately, two of his brothers and their families had scheduled a visit over the weekend. We had a great time, and Ken really enjoyed himself! He finally received Avastin on Monday, June 9th. On tuesday, he suffered from a small seizure, and wound up being admitted to Danbury Hospital. The tumor & edema has continued to the point that he now has a "midline shift". His motor skills (and some cognitive functioning) have declined significantly. The Avastin can take 7-10 days to "kick in", so we remain very hopeful that this will bring some significant improvement. As of now, the plan is to get him out of the regular hospital (hopefully in the next few days) and moved into the rehab unit while we await improvement. Thanks to everyone for all of your calls & prayers. He does enjoy visitors, so anyone who is local and would like to visit is welcome...but please call or text me first just to be sure :)