It was a perfectly normal Saturday. We had a nice breakfast, watched Banyan dominate on defense at his flag football game, stocked the house with healthy groceries for the week, and enjoyed a fun relaxing afternoon with our family. Leukemia didn’t get in the way of life today.
I finally posted in the online moms’ group today about Benjamin’s cafe-au-lait spots. A conversation with a new friend in Canada piqued my interest; her child has leukemia and also has spots. Turns out, so do many others. So far, eight other mothers have confirmed the presence of spots (but not of Neurofibromatosis) on their children. I am just climbing down this rabbit hole, but feel certain there is something to it. I will keep digging.
I feel so grateful for this chilly, rainy night at home with my most favorite people in the world. Wishing everyone I love peace and deep comfort tonight.
You probably shouldn’t post these assumptions before doing some valid research. Both my sons were born with cafe au lait spots and when you post that you think there could be a link, it makes my heart race. I would prefer you don’t scare me or others with info that very well may be false. You are reaching a large group of people and can have a huge impact. I enjoy reading about your family. Please keep writing with that in mind.
Gotta weigh in to say
Just
Write.
You have enough big emotions to manage in your world that trying to manage those your readers *might* experience to the list.
Cancer is scary, yep, that is totally true.
I know this blog is a window to your process, and as a reader I will install my own filters before reading.
You are generous to share like this, on a daily basis, and keep it so real.
Reading the latest more recent post about families with new diagnosises and their hunger of for information, I imagine them staying up all night and reading your story, and having the same tears of empathy and relief at key moments that you cried when you read about the man who had his first child after ungoing the treatment protocol Benji is on. It all has to all be here, the process, the fears, the wondering, the triumph for it to be real and of the most value.