Saturday, November 13, 2010

Home Again, Home Again

Julia got discharged from the hospital this morning and after driving home very slowly through the snow and slush we made it home. We were greeted with a family of snowmen in our front yard. Julia's friend Brinley and Brinley's mom stopped over and built snowmen with help from Finn and Co. It was a nice sight to come home to.

So the next 48 hours for Julia are still all about surgery recovery (she's technically had three in the last three weeks). Pain management, comfort, and food and liquid input and output.

Over the past five days, there's been a fact that we learned during the diagnosis that's been on my mind. That fact is: When they put in the drainage tube to drain what they thought was an infection, it potentially spread cancerous cells outside of the tumor. And because of that, Julia is considered to be at stage 3 whereas it probably would have been at stage 1 if they had operated to remove the tumor rather than draining. (Stage 1 for Wilms' tumor means completely contained while stage 3 means exposure to other parts of the body.)

After this all sunk in, I had some conflicting thoughts. I was trying not to feel disappointed and mad that something else wasn't done. I told myself that it didn't matter - it was all in the past, couldn't be changed, and rather than spending energy and emotion on things that couldn't be changed, I would focus on what needed focusing on right now.

I became okay with that rationale over the next few days, but felt even better about it all after a conversation with one of the doctors. Julia's presentation of her Wilms' tumor was not normal. In most Wilms' tumor cases, a child gets admitted with a large bulge in their abdomen from a rapidly growing tumor. Julia's case was found out about because of the first hospital stay when the drainage tube was put in. If that pain had never mysteriously started, Julia would still be feeling fine but would still have a growing tumor on her kidney. By the time it was found, it could have spread or done all sorts of nastiness inside of a six-year-old's body.

Another interesting thing to note: In the U.S., the normal course of action for a Wilms' tumor is to remove the entire kidney. Julia's didn't go that route because of the unusual presentation and path that led her to surgery. Our oncologist even told us that a doctor approached her to question why the whole kidney wasn't removed. In Europe, the way a Wilms' Tumor is treated is exactly how Julia's was: removal of the tumor, but leave the kidney. There isn't really a right or wrong, just different ways of doing the same thing that can reach the same conclusion.