We’re checked in at the hospital and waiting for round three of Ben’s 3F8 antibody therapy to start. His port has been accessed. He’s laying on the bed playing his DSi and trying to tune out what he knows the day will be bringing him.
I am more than a little tense, myself. I hate the first day of 3F8. The last two cycles have proven that Monday isÂ absolutelyÂ horrendous so I’m not looking forward to this. The pain. The screaming. The tears. And that’s just me. Ben will be doing these things, too. Times two. Or ten.
Arriving on the 9th floor of Memorial Sloan Kettering Cancer Center breaks my heart. When I walk onto this unit I’m overwhelmed with how many children are suffering. Kids without hair. Kids without limbs. Missing eyes. Ports. Stents. Wigs. Prosthetics. Honestly, it’s a lot like the land of Misfit Toys (you know what I’m talking about if you’ve ever seen the stop animation special “Rudolph the Red Nose Reindeer”).
Look! There’s Missing Toe Sally (she’s supposed to be a Twinkle Toes Sally)! Or Sammy Stitched-A-Lot (he’s supposed to be Sammy Kicks-A-Lot)! I wonder what happens if you pull the string on that one? Oh, wait. That’s an IV. Nevermind.
These kids just want to be normal. Instead, they’ve been banished to the Land of Cancerous Kids. And instead of the Abominable Snowman who tormented Rudolph, Hermey, and Yukon Cornelius, these kids are tortured by a beast named Cancer. It’s not fair. Ridiculously unfair.
In my mind, though, I’m hopeful that these kids go on to live out their lives and fulfill every dream they’ve ever imagined.Â May One-Legged Stevie go on to be a soccer star andÂ Missing-Eye Molly go on to be crowned a beautyÂ queen. Â And to the kids who make fun of them for being different in any way, well, there’s just no stopping that, I suppose. Kids are cruel. But may the adults in their lives encourage an understanding thatÂ just becauseÂ my kid is different from their “normal” kid it doesn’t mean it’s okay to make fun of them. My kid is battling for his life. He’s got enough to deal with without someone calling him “shorty” or making fun of all his scars.
Some people might see him as a “misfit” but I see a true hero. He’s endured ridiculous painÂ and summonedÂ the strength to take down this nasty beast. Twice. This floor at MSKCC is full of heroes. I pray that they all skate through adolescence with their self-esteem intact.
And someday, these special kiddos will be the boss of all those bullies they’ve had to put up with. I have no doubt about that.
Hope that hard first day is past and you have some smiles to share with each other. Thinking of you! Jane in Minnesota
AMEN!! Sarah that was the best analogy I’ve heard in a long time. Thank you so much for writing that. I am going to read it to the kids tonight and share it with everyone I know. WE are all thinking about you and tell Ben the kids remember him in every prayer they say…he is blessed at least 10 times a day in our house as are you. You are all amazing. Good luck in days to come. I can’t imagine what you’re going through and we just want you to know you’re not alone. Much love, Aimee Kelley and family
God Bless You and Your Son! Your son is a hero and he is different from other kids because he is wiser. I went to Watkins and have read about you on facebook. Wanted to stop by and share a word of love and prayers for you all.
All my thoughts and prayers are with you. What a wonderful family you have. You are so strong and caring. All my heart goes to you and your family.
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