After realizing that I couldn't shake my uneasiness with a lot of information that I've received lately I decided this weekend that I would call our diagnosing physician at Children's on Monday to see if I could talk with her to better understand how Georgia fits into the criteria for JMML. Monday morning came around and I made the call, when the doctor got on the phone I was surprised at what she had to say.. she said that she was going to call me, that she'd received a call from the SCCA attending and something about our blog, that someone over there had read my post after our arrival conference and shown it to him... I thought "oh my god, what did I say... wait, that's right, the one where I called him an arrogant ass".. well now who feels like an ass? I told her that I just needed to understand more, I need to be more comfortable with the information. This has all been such a whirl wind and I need to know that if Georgia comes to me later in life wondering why she is different that I can tell her why we did this for her... not to her.
We have a meeting scheduled with her for Thursday but that still left our clinic appointment at the SCCA today, the one where we'd see our attending doctor. Needless to say I went back and read my post and thought even though I was a bit embarrassed ultimately it's how I was feeling.
This afternoon when we met with our team we reviewed any new Georgia data then I plainly said, "so I hear readership is up on our blog".. yes it is he responded. What followed was a really good, honest, caring conversation about where we are and our lovely daughter. I did most of the talking (versus Brian) as I was the one who had obvious concerns. They told us that we could meet with a JMML expert in San Francisco but not until the 11th - did we want to postpone things - all of a sudden I felt myself needing to let our team know that we do want to go to transplant and that we really are thankful that we are here at the SCCA. The attending let me know that he'd read our whole blog, this I appreciate, that he took the time to see where we've been but if for no other reason than he knows Georgia better. I explained that this is so hard, I lost my mom to cancer and can't believe I am here now. He said that after reading the blog it sounds like I am still coming to terms with Georgia having leukemia so the question is do I need to get comfortable that she has the right diagnosis or do I need to get comfortable with the fact that my daughter has cancer. He hit the nail on the head... something I didn't realize was true for myself until that moment, I have certainly not come to terms with the fact that Georgia has Leukemia. I don't deny that the diagnosis is true or that the information has been reviewed by the best in the business but that is very different than accepting that your baby has an awful, awful disease. On top of Georgia having cancer, she has Leukemia which is very isolating - we are doing everything within our power to keep her safe and healthy at all times, this is challenging but also removes you from your support system. There are so many amazing people who want to help us but we have to keep them at a distance to keep her safe.
In the end we made it very clear that we understand that Georgia does need a transplant and that we trust in the team that will be caring for her. I told them that I am working on accepting that this means giving up some control as a mom, this is hard but necessary. I think they see that I am someone who does their damnedest to operate as a glass half full person.... so to all members of the SCCA, welcome to Georgia's Cure Team, we're glad to have you.

Given the recent events I thought about trying to edit my posts, about making the blog private or stopping writing here all together but none of that seemed to sit right so I offer this:

DISCLAIMER:
This is the blog of a mother, one whose love for her daughter is indescribable. It is where I go to vent my frustrations, share my fears and melt down. I am a person who has a positive attitude but finds that can be challenging as I watch my baby on her path to conquer cancer. When I get down I come here to let it go so I can take on what ever is to come the next day. Read with the understanding that my posts are fueled with emotion as I navigate through the obstacle course that life has put in front of us.