September 2, 2008 (Tuesday)

Today my wife and her mother took all of the children to Dr. O for dilated eye exams and prep for such exams under anesthesia. Dr. O was very excited to know that Dr. P had a treatment plan that included potentially saving the eye. She had high praise for that group and seemed interested to know how things work out. She told my wife that the team here did not have the experience or expertise to recommend such a course but was glad that Dr. P's group was so close.
The tests went fine today. There were no additional signs of retinoblastoma in any of the other kids or my wife (apparently Dr. O had a look at my wife's retinas as well). Next monday EUAs will be done for the kids under 6.
The plan is to get the port-a-cath put in tomorrow, however nobody called back tomorrow to tell us how early we were to be there or even confirm what time the procedure was. It is frustrating as there were lots of scheduling issues today that my wife had to take care of but tomorrow's procedure has not been confirmed for us. We were able to speak with our insurance representative as Gracie has a case manager. It was confirmed that while the pediatric surgeons that we need to use tomorrow are normally not covered by our insurance, they would be partially covered tomorrow. It is nice to have a case manager to answer insurance questions but it is still confusing as to how much and when things need to be paid. Also it seems like there are alot of people going to be involved in Gracie's care and yet no one (except us) is coordinating between everyone. I am not sure if that is just our perception but it seems like things only get done after we (mostly my wonderful wife) makes a phone call or two.
Anyway, we still eagerly anticipate starting chemotherapy. It feels like that is the beginning of the end for cancer in our little girl. We are finding more and more support from friends and family each day and appreciate it very much. It continues to help and sustain us.