Michael's oncologist, Dr. Korones, called earlier this evening. There had been some miscommunication between him and Dr. Pilcher's office. Dr. Korones had been told that they were able to remove all of Michael's tumor during the surgery and based on that information, he had decided to hold off on chemo and radiation. Based on a conversation he and I had several weeks ago (during which I told him that was a contradiction to what we were told by Dr. Pilcher), he spoke again with Dr. Pilcher and Dr. Pilcher verified that he was unable to get all of Michael's tumor. (BTW - this is now one of those "panic days" I spoke about earlier this week.)
Dr. Korones is now waiting for Dr. Pilcher to review Michael's records to let him know if Michael is in any danger if the tumor starts growing again. If there is any chance of danger, they will start more aggressive treatments now (probably chemo since radiation can devastate a 4 year old's brain). If not, he is comfortable waiting until December to see what the remaining tumor actually does. (Michael's next MRI is tentatively scheduled for December 20th.) He said this evening that sometimes this type of tumor not only stops growing but actually shrinks. (Let's hope that is the case with Michael.) He reiterated that he still believes that Michael has an excellent chance of surviving this ordeal.
Dr. Korones & I agreed that it might be worth a trip to Rochester before December to talk face to face and to go over Michael's MRI's and pathology reports in person. Someone from his office will call next week with an appointment for the following week.
Also, the other day I signed up to participate in a program called CompassionNet. It is somehow associated with our health insurance but isn't really a part of our insurance. Our case manager, Laurie, came to the house the other day and we talked for quite a while. They provide emotional support, financial assistance with travel expenses, education and can act as liaisons on our behalf. Basically, they will help with ANYTHING we need. When she left, she spoke to a nurse practitioner in her office named Susan. It was Susan that actually called Dr. Korones to remind him we were waiting for some answers which is why he called tonight.
Laurie & I also discussed our option of getting a second opinion. If Jeff & I decide to go that route, CompassionNet will help us set it up and help cover the costs of traveling. She & I discussed the best choices in Michael's case and agree that Boston General would be an excellent choice. Jeff & I just have to make a decision.
For those that don't live close by, the tank top Michael had on earlier this week has given way to long sleeves and jackets. When Michael got off the bus this afternoon, he complained that the cold wind was hurting his head. It looks like his incision is going to be very sensitive to the cold (at least for a while). As much as Michael hates hats, I think he is going to have to get used to wearing one. We will keep everybody posted on any new developments. In the meantime, keep Michael in your thoughts and prayers. JoAnne