Ben was diagnosed with Stage IV Neuroblastoma when he was 2 1/2. Most kids that age are working on their vocabulary and honing in on those fine motor skills; running, jumping, wreaking havoc, etc. My Ben was not eating, battling chronic fevers, and occasionally limping and collapsing because cancer had eaten multiple holes through his pelvis. Seeing those initial images of what resembled a piece of fabric a moth had gnawed through was probably one of the worst moments for me. That evil lurking in my son and destroying him from the inside out. I was mad that the “monster under the bed” was actually living inside my son and there wasn’t a darn thing I could do about it. Except allow doctors to nearly kill him with copious amounts of chemotherapy.
When we were initially admitted to the hospital, that first week was mostly tests: biopsies, scans, and surgeries. Ben seemed to get sicker that first week as the doctors planned their course of treatment. I want to know who labeled it “treatment?” There’s no “treat” to this. Chemo doesn’t know what it’s killing, it just goes in and kills everything. And from the explanation the doctors gave me, they were getting ready to load my toddler up with an extremely toxic cocktail of multiple types of chemo. I was scared to death. We had no idea how he was going to feel – the “cocktail” that he was going to get was so severe that most adults wouldn’t be able to tolerate it. Try explaining this to a toddler. I wasn’t sure what he’d be able to comprehend and what would simply fly over his head. But, he seemed to grasp it better than I expected. And he nicknamed his harsh treatment “chee-mo.” It somehow made it seem less toxic.
Lots of things have to happen before chemo can be administered. Since Ben hadn’t had it before, he needed lots of pre-meds (for nausea, etc) and lots of hydration. By the time everything was finally put in place and he was ready to receive his cocktail, happy hour was long over. It was midnight on a Friday. All the familiar faces on his treatment team had gone home for the weekend. I was just getting used to the idea that my son was going to be pumped full of poison and here we are – all alone – with a whole new group of people who didn’t know Ben. I didn’t know what to expect. So, as they hooked him up to an ominous looking bag, the nurses went through a lengthy checklist before starting the IV, ensuring that they were administering the right toxins to the correct child. Then, they pushed the button, smiled at me, and left the room. I sat forward in my chair, ready for the fallout. Bedpan beside me. Wet washcloths standing by. Trigger finger on the nurse’s call button, ready for the slightest sign of anything gone awry.
I have no idea how long I sat tensed up like that. All I know is that I woke up later when the beeping machine alerted everyone to the fact that the infusion was complete. Ben was resting peacefully. I heaved a sigh of relief as the nurses unhooked him and changed his chemically loaded diaper. Having chemo sit against a delicate toddler butt is NOT a good idea. He ended up getting the worst rash I’d ever seen. Little did I know that I’d be learning all sorts of crazy things over the next 15 months of Ben’s treatment. Things that simply don’t exist in any parenting book out there.
So, imagine my surprise when my toddler was acting like an actual TODDLER the next morning. Ben had felt so bad for so long that it had become his normal. He learned to live with the pain. He accommodated the cancer because he didn’t understand that living wasn’t supposed to feel that way. He adapted. He dealt with it. He didn’t know life to be any other way. So, when the chemo started killing the bad cells, he felt GREAT! And as the chemo drastically altered how he looked on the outside, it was making his insides all better. Yes, it took away his hair. It made him look really sick to all who would now see him. But, for the first time in his little world, he actually felt good despite his outward appearance. It ended up being a good thing. It ended up saving his life.
So, in three hours he’ll be starting again. And while he doesn’t call it “chee-mo” anymore, hopefully it will still do the same thing it’s supposed to: kill those effing cancer cells. My heart breaks that he’s nearly 12 and still at this. He’s had a normal childhood ripped from him. And now, cancer is threatening to rip his adolescence from him, too. I know I still see him as a toddler sometimes. I’m sure most mothers have those moments from time to time. But this child has spent too much of his life tethered to a bag of chee-mo, grasping for the normalcy that most children are freely given. It pisses me off that he hasn’t been afforded that same luxury. I’m sick of being rendered helpless and having no choice. He deserves so much more.
Keep Ben close to your heart today as he starts his third battle against a relentless beast. A bully who does more than jab at his self-esteem. A habitual criminal hell-bent on taking his sweet, young life. He’s ready to fight and I’m standing right beside him, you stupid jackass. And he’s got an entire army behind him now.
We’ll beat you again.