It’s “Lame Duck” Day

A “lame duck” is not an injured water fowl. No. A “lame duck” is someone whose tenure has run out. Someone who needs to be shown the door. One whose glory days are long behind them and now they’re just taking up valuable space. I’ve been out of the workforce for a long time (and I do not miss it a bit) but I’m thinking that I know something that fits this “lame duck” title well. Neuroblastoma.

In its heyday, neuroblastoma coursed through my son’s body, eating away at every healthy cell Ben had. It caused him pain. It took away his ability to be a normal toddler. It kept him from play dates and sandboxes (yes, he couldn’t play in sand!) and having the typical fun that any toddler should be having. It even took away all the progress he had made with toilet training. Once treatment started there was no way I was going to hold Ben accountable for going potty like a “big boy”.

Neuroblastoma is a Lame Duck.

We’re showing you the door, you big bully. You tried to come back but my Bean is stronger. He’s got Love. Strength. Prayers. And the best treatment team available. You’re going down. And you don’t get to keep any benefits or draw pension. You are useless and must be destroyed. You’ve occupied precious real estate for too long and now you’re being evicted. Don’t even think about finding another place to live. You’re not welcome. In any child. Ever.

We’ll be leaving NYC in a couple of hours. While we didn’t exactly get the road map of treatment we were expecting, we did hear the most wonderful news: Ben is CURABLE. And while this is absolutely positively the best news ever, he still has a long road in front of him.

Over breakfast this morning, I explained to Ben what he was going to have to endure over the next few months. He knew that the overall outcome would be great, but he wasn’t made aware of the details – the steps he would have to take to get to this “final level” of being cured. So, I told him. His big brown eyes fixed on me, occasionally widening when I said words like “chemo” and “surgery” and “antibody therapy”. Then the tears. I held him on my lap in the brightly lit Ronald McDonald house cafeteria as he cried and asked “WHY?”. And felt like a lame duck when I couldn’t answer his questions. All I could say was that I would be with him every step of the way.

So, a plan is in place. We’re tired but absolutely NOTHING will stop us from fighting. We’ll get you through this, Ben. Pinkie promise.

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4 Comments

  1. Love and prayers to all of you! I can’t tell you how happy the word “curable” makes me.

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  2. We will be praying for your family. Carolyn Wing grandma to Laura Stage IV neuroblastoma carepages,com page name LauraVDB

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  3. Yeah, baby! While you kick neuroblastoma’s ass, we’ll be here rooting you on the whole way!

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  4. Hey Sarah,

    So sorry that your “Bean” has recurred. Sounds like your in good hands in NYC. Be sure to log onto to ACOR.org (if you don’t already) and sign-upf or the N-blastoma group. It’s a nationwide parent-group bouncing ideas and information solely about NB around. The best resource ever for NB parents.

    Best to you and Ben.

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