Surgery is scheduled

I've begun to refer everyone to this blog, so I suppose it's time for me to write. It's not easy to feel these feelings. I want to avoid it, as everyone wants to avoid pain. That's human nature, but I know that I have a responsibility to Zoe to share what I can. Today, I received the official diagnosis from the pathologist in New York that is an expert in Chordoma that Zoe has Chondroid Chordoma.

I haven't yet researched it, but I do know that it is a particularly slow growing form of Chordoma. This may prove to be positive in the future, but only time will tell.
This last Monday we met with Dr. Sekhar in Seattle to find out what he can do for Zoe. We have heard wonderful things about him, and he is a leader in the kind of surgery that she needs which is skull base surgery. Her first surgery will be on May 13th at Harbor View Medical Center in Seattle, and we expect it to be quite long. As long as 12 hours. Don't ask me how a surgeon can perform surgery for twelve hours...do they take a break for lunch...I have no idea. Anyway, it will be on the right side of her skull and neck where the largest part of the mass is. His goal is to remove as much as possible during this surgery. As soon as three days later he, and a spinal surgeon, will perform a second surgery to fuse her vertebra that have been destroyed by the cancer. There will most likely be a third surgery some time later on the left side of her skull and neck to remove whatever is left of the mass that they can. It is likely that he will not be able to remove all of it surgically, it is just too large and has invaded too many dangerous areas. The goal is to get it to a point that radiation will be an option for her. Dr. Sekhar told us that this cancer has tremendous growth potential in a child a young as Zoe. She is growing at a fast rate as every child does, which causes this cancer to grow at a faster rate as well. If she was an older child, or an adult, this cancer would not grow as fast. Maybe the fact that this is Chortoid Chordoma will make a difference in this growth rate. I'll hang onto that until I'm told otherwise. So this is the calm before the storm. For now Zoe is home with us. She is on a steroid that causes her to be constantly be hungry. She eats almost non-stop all day. Strangely, this is comforting to me because she has finally gained the weight that I fought so hard for the last 1-2 years to try to get on her, but couldn't. Maybe this will give her body a little more strength for what's about to come. She is also on an emotional roller coaster as a result of the steroid, and from watching her world get turned upside down. We still manage to laugh and have fun at times, but the cancer is always in the room. I never let her out of my sight for more than a moment, and I sleep with my face buried in her hair. Hope and prayer. The two most meaningful words in our lives now.

Colleen Kahl (Zoe's Mom)