| May 15, 2004 Saturday Day +71 of Transplant Paige was discharged yesterday afternoon and we're so glad to be home. Unfortunately we were given more bad news before we left the hospital. The CT she had yesterday showed her disease has spread more. There were approximately 10 new nodules noted in each lung that weren't present on the prior exam, and also a few new enlarged lymph nodes. Besides that, there was an increase in a soft tissue mass noted in the area where her tumor was removed which is consistent with "residual disease," meaning tumor areas that were left from surgery. The CT results of the head weren't back by the time we were discharged, but we are expecting an increase there also since we can visibly see the larger skull tumors on her head and in front of her right ear. Last week Dr. Yanik had said that if the disease was a lot worse then he would give her the 5 days of chemo (ICE protocol) and then push the MIBG therapy back until late May or early June. Since Dr. Yanik was out of town and the oncologists covering didn't want to make that decision, they sent us home for the weekend and we will meet with Dr. Yanik at 1 pm on Monday. By the time we arrived home H-Care was here with the MS drip. She's connected to a small pump that gives her a set amount of morphine an hour and then we have the option of giving her a little extra with a push of a button if we feel she needs it. We also have the option to increase the continuous dose if needed. We can't say enough good things about everyone from H-care, they are always so quick to respond to our home care needs. While we had mixed emotions being discharged with this disease progression, we are so glad to be home. Nana and PopPop had obviously been busy cleaning and it was nice to come home to a neat house. A bit later Paige was so excited when Grandma arrived home with Levi. We sat on the back porch for a while watching it rain and listening to the birds. Paige was being silly, laughing and playing. It was so good to see her like that. We will wait and see what Monday brings and update then. Thanks to everyone for everything. Love, Andy, Sandi & Paige |