Update - 9/12

The CT scan yesterday came back NORMAL. This is good news in the respect that it did not show any other cancers in her belly or an abcess that would require surgical intervention. The bad news is that we are no closer to finding a cause of her fever now.

I spent quite a bit of time yesterday on the phone with both Dr Porter/Dr Kohn and also Dr Fritz. Earlier in the week, the oncology team was pushing for Campbell to be put on a course of steroids. The thought was that aseptic meningitis was causing some swelling which was causing many of her symptoms. Yesterday, they had backed off of that recommendation with the hopes that over the next several days this will start to resolve itself. The side effects from the steroids would not be worth the results that we would see from them. So we will continue to wait for Cam to start improving.

Monday will bring some more information on the next steps in her treatment and recovery. She is scheduled for spinal tap #3 in the morning and then we will meet with the oncology team to discuss the radiation treatment plan. From the initial conversation, it seems that the radiation CAN be done at Morristown Memorial. They are sending the information out to several "quality control" specialists to make sure that this is the case. If not, they will recommend additional sites for us to speak to. In addition, they are trying to set up a consultation up in Boston regarding the proton therapy treatment. Their thought is that the side effects from "conforming radiation" vs "proton beam radiation"are not significant enough to warrant uprooting the family for 8 weeks. The cost is also a potential issue if it is not a in-network treatment. We will discuss this all with them on Monday morning and no doubt will come away from our information session with hundreds more questions but are very happy that we are seeing some movement on her treatment. We know that you don't want to rush the process but it was getting rather frustrating not hearing anything.

This morning, she was up very early looking for waffles which she did eat. She has not had tylenol since last night around 8 pm and her fever is less than 101 this morning so we are cautiously optimistic that it may be going away like the doctors had hoped for. More encouraging still is that she is behaving a little bit more like herself. She walked into our room on her own and has been smiling more today. You can imagine our joy to see her little smile again!

With Hope and Love,

Greg, Robin, Caitlin, Caroline & Campbell