09/15/09

09/15/09 First my sincere apologies for the delayed update. I realize how much support, and concern for Joe exists, and I have been slow in providing updates this week. It was much easier back in Boston in the apartment when my focus was 100% on Joe, but back here at home the normal family demands pile on quickly - Again my sincere apologies. So Joe is doing pretty good his strength is coming back and the rash is still getting better. His weight is still the same though he is eating better he has not gained any weight he is staying around 183 he started at 214 when he got sick and 204 when he started chemo. We went to the doctors last Thursday and some of his levels have come up some more, though his potassium and sodium were low. It is not like when we were in Boston and they would go over all the blood work with us each day because they would have the test done stat. I have to wait until Joe's next appointment on Thursday to get the rest of the results and then ask questions. They called and left us a message about the potassium and sodium and I have to believe if there was anything else we needed to know they would call. They also fax all test results to Joe's doctors in Boston so if there was something to worry about they would call us. Joe is having a terrible time sleeping, he just can't fall asleep at night so it makes it tough for both of us since I have to set the alarm to get up at 6:30 am to give him his meds and he goes back to bed and I stay up for the day. So usually I try to hit the sack early if possible. Well we have been doing good at keeping Joe germ free so far, the first 100 days are the high risk days after the stem cell transplant this when the patient is at the highest risk of getting a life threatening infection and everyone has been so careful of not getting Joe sick. Thank you. Well Duncan tore his ACL in his knee last week and has to go to the vet tomorrow to start acupuncture, he needed surgery but they do not think he is strong enough to survive it so now I have two patients to care for. Friday was the funeral and it was a very beautiful service, though it still does not seem real to us, with so much going on we don't seem like we have had the time to mourn maybe now. What a benefit on Sunday for Joe it was amazing, I was brought to tears when Joe and I walked in and seen the amount of people who were there to support us. Again I have to thank all our family and friends and all the people who volunteered or donated toward the benefit God bless you for your hard work and kindness. Joe has a long road a head of him in his battle against this terrible disease Amyloidosis, but with all your support and prayers it makes it a little easier. Hopefully when we go back in February Joe will get the complete response we are praying for. We love you and keep praying for a complete response.