Good Morning Everyone,
Yesterday was tough – Addie’s pleural cavity did fill up with fluid as did her left arm and shoulder. Addie was having significant difficulty breathing and asked for another chest tube. They hesitated on the plurx catheter because of the incision they would have to make in her (very angry hot) skin and because of the amount of fluid that was still being produced. So we have another chest tube and it is not the take home kind. This process has revealed that we must take care of the shoulder and the lymphatic mass in her shoulder before we can take care of the chest tube. How do we get this lymphatic mass to decrease in size and stop producing lymphatic fluid? – hopefully the sirolimus – a medication that can take anywhere from a few days to a year to start working. Addie has been at a therapeutic level on sirolimus for about 10 weeks. Addie did start taking prednisone yesterday as well as an antibiotic to see if that will help with the inflammation. On Monday we may decide to try vincristine to see if that medication will be helpful, but again vincristine could take up to 3 months to be effective, and wether it will be effective is unknown. As I have been told over and over – and as I have come to know personally – this disease is extremely complicated and the treatments are all considered experimental, – a statement that all of you are becoming common with as well.
So, yes- yesterday was rough. Fortunately morning comes – and a good nights rest allows the fighting spirit to continue. Addie and I listen to the reports of the crazy storm, and watch the wind swirl outside her window. I did get to walk this morning – and saw about 6 cars stuck, and very few individuals out and about. I honestly welcomed the 8 inches of snow, and enjoy the quiet that it brought.
Addie is currently face timing with the craziness of our home life in Missoula. We are enjoying watching and listening to the chaos that seems to constantly be ensuing at our home. We miss it, love it and nothing sounds more appealing.
Michal