Today Addie has a great day planned. Phoebe, a cousin and friend came to visit. Addie’s Aunt who is currently there with her went to go find a slushy maker and a new release movie that Addie has been wanting to watch – and Addie is hoping to get up and get moving, perhaps a […]
It’s been another quiet week. Lots of conversations, a couple ideas, a treatment plan being discussed – and home an ultimate goal. Addie will begin vincristine this week. It is a medication that other patients with this disease have used with sirolimus to try to stop the “flare up”. The “flare up” being the cyst […]
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 […]
Today Addie is quiet. She waits to see just how her body is going to adjust to this new change. The chest tube had been in for more than 3 months and now is finally gone. The hole that the chest tube was in remains open and continues to be the path of least resistance […]
Hello Everyone, Addie did have her chest tube removed today, this morning 9 AM, eastern time. She is being closely monitored to seen if her body is able to reabsorb the fluid and stabilize. If not, they will be inserting a plurx catheter, a chest tube that we will be able to monitor from home. […]
Saturday’s in the university area of Philadelphia are much quieter than the rest of the week. Today our friend Phoebe took me outside of the University area on a nice walk/hike. It was great to see a bit more of Philadelphia. It was a quiet week for the most part. Addie did have a Zometa […]
I will try to find some good pictures for the next post. Per Addie’s request, I am not allowed to include any recent ones of her. Fortunately we have had a very uneventful weekend. The week was a bit tough. By Thursday, we had not seen any decrease in output and the mass on Addie’s […]
Today we are sad and our hearts hurt, not for us – but for one of our all time favorite doctors and his family. His smile and humor always brightened Addie’s day while she was in Missoula. I had the honor and pleasure of being Grace and Abe’s school counselor when they were in 8th […]
Here is a picture of Addie in our camper this summer. Her faithful companion Sue close by. Addie is not interested in many pictures these days – and I know most of you would rather see pictures of her than of Ryan and myself. Addie had her 4th procedure yesterday. It was another long procedure […]
I made it to Philadelphia just in time for the New Year. I think Addie is glad I am here; I know Ryan is. Addie is doing alright. She had another “procedure” on Tuesday. They felt that once again they were able to find some problem areas, however they felt that there are still significant […]