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What Not To Say… And Some Reasons Why…

Reprinted with permission from the Dragonfly mom that wrote this post on our private Facebook page for our Dragonflies.

“My favorite (thing people say) is,

“You are so lucky this happened when J was a baby so he’ll never remember it.”

First, I don’t put the word ‘lucky” into the same sentence that states my child has cancer. Second, he has a daily reminder of what happened when he sees his huge belly scar and central line scar. Third, he might not remember every detail but then how is it that we go a year now between scans, but as soon as we wheel to the anesthesia room, he covers his nose and mouth. I think they remember more than we give credit for. He’s had teeth already rot and we’re watching to see if he has any adult ones missing underneath like some of our friends’ kids. The long term effects scare the crud out of me. And then of course there’s the worry that it will all come back.

The latest I hear is that it’s so great we’re nearing the 5 year clear mark because then we’ve made it and can move on. We try to move forward every day, but this will forever be in our lives. Shoot, we knew of two neuroblastoma kids who had it at birth like J. One went clear for 11 years, the other for almost 20 years. It came back and both died. So to hit the 5 year mark doesn’t mean we’re out of the woods.

Someone even told me recently as we plan for his kindergarten registration that there’s really no reason to even talk about it at his school and have that hanging over him. Huh? They kind of need to know his history. Okay, I’ll get off my soap box now. This just hits home so much. And this is precisely why I am SO thankful for my dragonfly family.”