5,332 days (Day 356)

This year has been hard in ways that I haven't stopped to acknowledge, except in the moments that have been hard. But, the hardness--courtesy of childhood cancer--is a constant drumbeat. Lily's shunt failure in June only made the relentless rhythm louder and faster. 

I hate cancer. 

Everyday since May 16, 2007--that 5,332 days--we've had to wake up and make the choice to ignore our very worst fear and live. 

5,332 days. 

And we've done it, despite the 30 days in the Pediatric ICU and the endless MRIs and the 36 proton radiation treatments and the tears and the rage and the two shunt failures. Our daughter has been forced to do it, too. She is nearly grown up now--a blessing that I am so scared will be ripped away--and she is forced to reckon with cancer in the way an adult must, while still being the child who had a brain tumor. 

It's a lot for her. I don't know how she lifts it. But she does. I see her making the same choice every single day: to live. 

In this pandemic, I've been grateful, in a strange way, for the horror that rocked our family in 2007. It prepared us for days of uncertainty. It prepared us to live in the spots between cancer and now between pandemic. It taught us how to talk back to fears that won't ever leave. 

But, even so, it is hard friends. 

We have, since Chloe was born, hosted a summer lemonade stand--first in our front yard in Lindenwold; then our biggest stand ever at Lindenwold Park with the biggest cup of lemonade ever, then at our new park, right across from Eldridge and last year, in our front yard. Hosting lemonade stands has always given us a level of control in this fight. It is something we can do to help and it is something our kids can do. 

This year, I could not get myself in the spirit; depsite the fact that I know first hand how much research and family support services are endlessly and desparately needed. And despite the fact that I know how healing and empowering a lemonade stand can be. I just felt so tired of it all--so tired of being the childhood cancer mom and instead, found myself playing the role of supporter--donating, continuing my writing work for Alex's Lemonade Stand Foundation and advocating for others, but not for ourselves. 

And while I know I have the right to be tired and take breaks; this was an indulgence on my part. I indulenged the illusion that we were finished with childhood cancer and that childhood cancer was finished with us. Illusion might not be the right word; but lie, lie is the right word. 

Lies never hold. The drumbeat of cancer was and is ever present and the only way I know to premanently quiet it is to end cancer. And the way to end cancer is through research. And the way to fund research is through Alex's Lemonade Stand Foundation. 

So, here we are, 4 days until Christmas, 11 days until the year ends and we planned an off-season hot chocolate/lemonade stand for Thursday, December 23 in our front yard. It's a funny thing, as soon as I committed to it and posted the event, the drumbeat and the fears quieted a bit. It was a choice we made--the kids along with us--to say no to the fear and no to the illusion and yes to the truth and the light and the cures, that I know will come with research. 

If you are around, stop by our front yard on 12/23 between 4:30-7:30pm. If you aren't around, donate online to our stand.

And thank you. Thank you for choosing to walk this path with us.