May 16 (Day 136, Year 3)

Well, friends, another May 16 is almost over. As I wrote last night, the trauma of this day will always be there and I never really know how it will be, just that it will be present and accounted for in some unpleasant way. 

So, today, I decided to protect the fragile bits of peace and sanity I had left and pick the important things to do. 

I helped at my son's book fair and had a very good and wonderful friend show me where Nick's artwork was (we missed the art show last night for a soccer game) hanging, while we traded some gossip and downloaded the events of our days. I worked. I prayed for my son's friend who is facing an imaginable surgery for osteosarcoma.  I prepped and brainstormed for my graduate school class that starts next week. I went for a run with my middle daughter and to the mall with my oldest. I planted flowers in my front planters and helped Lily write a speech to share tomorrow at a talk with some student oncology researchers. 

I talked through some tough stuff with my youngest--he worries so much about cancer and his sister and other kids. And like me, he finds peace in praying, talking and understanding. 

Those important, busy things helped get me to 10:30pm on the anniversary of the scariest and worst day of my life. 

But, tomorrow, friends, is a better day because I know how this story turns out:

Lily survives. She falls and she stands back up. And in June, 16 years after she was discharged from CHOP and sent to MD Anderson to have her radiation mask made, she’ll fly to Florida with her Dad to race in the US Youth Nationals with her crew team.

She will show the world, again and again, that she is not the girl who had a brain tumor. She is the girl who survived a brain tumor.

Thank you to everyone who cheers her on. And hell, thank you to everyone who underestimated her. The tumor did the same and look where it is: frozen somewhere and hopefully powering research that will lead to its demise and cures for other kids. 

For now, I am shutting down for the night. Snuggling up with tea and a book, because on May 17, 2023, I have to get up at 4:15 am to drive my incredibly strong daughter to her first crew practice of the day.