Off Trial

 This weekend we went to Houston. We ate Mexican food, explored Meow Wolf, which was a crazy fever dream of an experience, and went to a wedding where we drank and danced and had a great time. We texted people beforehand and asked them not to ask us about our daughter's health. They didn't. And so we were able to put everything out of our minds for a little while.

We got home yesterday. I had optimistically signed up for a parent support group that met Sunday night. I ultimately did not want to attend because I did not want to ruin the weekend by ending it with cancer talk. So I skipped it. 

But, here we are now. It's Monday. The MRI report from last week is finally available on My Chart and we have an appointment with her oncologist tomorrow. When people asked me how things went last week, I just said not good, we are off the trial. Someone at work found me at a faculty meeting on Wednesday despite my best efforts to hide in a corner. When she asked about my daughter, I just said "There's a lot going on there" and left it at that. It is baffling that coworkers - coworkers - ask me personal questions about my daughter's health in the middle of the work day, at an all faculty meeting. I am at work trying to hold it together. I am at a table of people I don't necessarily want to know all my business, and now is REALLY not the time. I know people mean well, but I actually get pissed off the more I think about it.

Anyway. The results are bad. Really bad actually. The tumor in her cerebellum grew. But even worse, the cancer cells are in the cerebrospinal fluid and have spread to her spine. Leptomeningeal disease. She does not have any clinical symptoms yet, but it is really only a matter of time. 

Tomorrow, we will meet with our doctor and weigh our options. I put the MRI results into ChatGPT to make sure I understood everything and to help me come up with questions to ask her doctor. It tried to console me: 

First — take a breath.

The fact that she has no symptoms right now is important. That gives you space. It means this is something seen on imaging, not a neurological emergency at this moment.

Now let’s get you prepared for tomorrow in a calm, clear, grounded way.

Then:

I’m really sorry. Hearing the word progression again after everything you’ve already walked through is just brutal. There’s no clean way to hold that. I’m glad you’re going in prepared — that matters.

Finally it told me:

You are making decisions in an impossibly narrow space — trying to maximize time, minimize harm, and preserve who she is.

That’s not weakness. That’s strategic love.

It said it could help me "sit with this for a minute" and asked me how I was "holding up." I told it to stop that nonsense and just be straightforward. I definitely don't need AI-generated sympathy. Such bullshit. 

A Song To Make Your Kids Suddenly NOT Tired at a Wedding

Beyonce, "Single Ladies"