Whew. Ben’s scans were clear. I can breathe again. Well, until the end of next month when scans will be repeated.
I spent the last week peeking around corners, trying to be as quiet as possible, so we could sneak by cancer. It’s still around… it’s always around, but for now it’s sleeping. It’s like a volcano. It has erupted in the past and we were on super-double-secret lockdown while we rode the storm out. But with each passing day we sneak closer and closer to normalcy, knowing it can erupt at any time and spew its fiery lava into our lives. It’s like a bastardized game of red light-green light. Run like hell until it shuts us down. Covering us with its incendiary ash and freezing us in our tracks, daring us to move so it can catch us again.
Tag. You’re it.
But for now, we’ve found a good hiding place. And as each day passes we become more comfortable. Forgetting the promises and bargains we’ve tried to make with the beast as it leaves us to celebrate the frailty of life. Always understanding that becoming too comfortable will end up surprising us in a way that has the power to destroy us.
This is not a fair way to live.
I know this sounds a bit paranoid, but there are always a few people out there who don’t understand the process. “Ben is NED? Does that mean it’s over?” Unfortunately, the answer is no. It may have been the case for us once upon a time but when he relapsed the first time – despite it being four years post-treatment – we knew that we were up against a new type of beast. There are some children who have neuroblastoma once and finish treatment, never to hear from neuroblastoma again. But when a relapse comes, you find you’re fighting a whole new horror. And with each relapse it gets harder and harder to beat.
Last week before scans, I dropped Ben off at school. I always sit and wait at the curb, my idling car patiently waiting, just to make sure he makes it inside. Or, to rescue him if he decides to make a run for it. He never does the latter, but I want to be there just in case he does. On this particular day as I watched his oversized backpack dwarf his small frame, his arms devoid of its usual pendulous swing, I knew he was tired. I think he likes school okay, but he’s exhausted. Middle school is a whole new ballpark. Switching classes. More homework. New people. Some of them friendly, some of them not. And coupled with this new course of chemo, despite it being a fairly low dose, he’s wiped out. I’ve formed a bond with the school nurse, who is absolutely precious and a cancer survivor herself. She knows the drill. He seems to spend quite a lot of time with her, feeling nauseous, feeling tired, or snagging a soda from her stockpile. I know he’s in a safe place with her.
He did, however, get bullied by a few kids recently. One kid was calling him “tiny Ben.” Ben advocated for himself and told the kid he didn’t like to be called “tiny.” He is particularly sensitive about his size, so this is hurtful to him. I was proud that he asked the kid to stop and when he didn’t, he took it to the next step. I applaud his bravery. But then a couple of girls approached him and his best friend in the cafeteria and asked if they were going to the dance after school on Friday. The boys said they weren’t. Then the girls turned evil. They said that Ben and his friend were the ugliest boys in school and no one would go to the dance with them. When Ben told me this, I went looking for my Edward Scissorhands gloves. Tears immediately sprang to my eyes and I asked Ben how he felt about this. With downcast eyes, he reported that he didn’t care. I mentally called bullshit but I left him alone. I immediately contacted his counselor at school and reported what happened. She, too, had a very emotional response and said she’d take care of it. Within two days she presented Ben with a handwritten note from both girls, apologizing for being meanies, and promising to amend their behavior. They got in big, fat trouble, both at school and at home. The Edward Scissorhands gloves are back in storage – for now. Ben went to the dance with a group of friends and had a good time, and even danced a bit. I would have loved to see that. 🙂
I so wish we could get a handwritten note from neuroblastoma, saying how sorry it is for torturing Ben and killing so many of his friends. Unfortunately, it doesn’t care. So I have to sit by and watch as it wears on my son – mentally and physically. I can’t tell on it. I can’t stop it. So I sneak around it, praying every day that it doesn’t come for our lunch money.
It’s hard to live in this shadow of fear. But with each clear day, we’ll creep towards normalcy, hoping the bully shrinks into the shadows. We certainly don’t want it to torture anyone else, but we sure would like it to move to a far away and desolate location. Like Detroit.
Scans will happen every other month for now. This study he’s on will take a year. Things are good right now – and we’ll embrace that – but this is far from over. We’re patiently waiting while begging and pleading for the coast to be permanently clear.