Let’s play a game called imagine, shall we? Imagine that you are a toddler with cancer, only you don’t know that you have cancer, and you don’t know why your parents keep taking you to the cold scary place where people in masks poke at you with gloved hands. They say they are giving you medicine to make you well, but then you throw up repeatedly. And you cry until you fall asleep. Your comfort comes from a tape player, and the voices and the beats that comes from it. You love Michael Jackson the most. And oh, there’s also your pink blankie, the one with the gray and white kitties on it. You like to be wrapped in it when the nurses came in your hospital room, because you thought if they couldn’t see your body, they couldn’t do anything to you.
Imagine you’re two years old, having gone under the surgeon’s knife twice for tumor removal. You have neuroblastoma and now it’s just a matter of finishing your chemotherapy protocol. Your ears hurt, and you cry, but no one notices. You’re taken back to the hospital for scans because your doctor thinks your cancer has come back. But it’s a mistake. There’s no new tumors. You are released. Then you start to burn up, crying, screaming that your legs hurt. You cry and cry.
Imagine there are whispers of “untreated ear infections” and “viral encephalitis” and “damaged brain stem.” You are in a semi coma. Sometimes you wake up and just cry. You cry yourself back to sleep. In your waking moments, you feel rather than hear your parents ask if you want to be held, and you vehemently shake your head no. You know without being told that you would not be able to hold your own head up and it terrifies you. Everything terrifies you.
And imagine that when you are released from the hospital two weeks later, you are a newborn baby in a toddler’s body. You have no strength, can’t even sit up on your own. Your voice is gone. Your right hand, formerly your dominant hand, is curled in a ball at your wrist. You can’t swallow so you have a feeding tube placed in your stomach. The doctors sadly tell your parents their prediction: whatever you didn’t get back within six months you’d never get back.
Imagine that six months went by, and you can barely sit up even surrounded by pillows. No one knows you lost most of your hearing too, because you’re smart and quickly adapted to reading lips. And you watch your baby brother, born a few months after the viral encephalitis changed you. When he starts to crawl, you start pulling yourself across the carpet on your belly, building up strength in your arms, eventually working your way up on your hands and knees. And then when your brother takes his first steps, you crawl over to the coffee table, pull yourself up on your feet and take your first steps again.
Imagine your mother teaches you some sign language so you could have a voice. You adapt to it quickly and remember all of it to this day. It’s handy when you need to go to the bathroom or are thirsty. You’re eating again, real food, though it is hard for you to move it around in your mouth so that it can be chewed (it still is, by the way, even now, decades later). And then your mom catches on to the fact that you are not responding to her when you can’t see her face. So your hearing is tested. You wind up with hearing aids, and your world gets bigger, noisier. You find your voice again, although people have a hard time understanding you.
And imagine another brother is born, and two years after that, a sister. You are so happy to have a sister at last. You give her one of your own dolls for her first birthday. You’re in a new town and you’re attending a new school. You finish third grade, and start fourth. And then, one night after you’ve had a bath, your dad carries you out to your mom and they spend a while looking at your back, tracing your boney spine with their fingers. You don’t think much of it at the time, but later you realize that was the beginning of your scoliosis journey. The radiation you had back when you had cancer had caused it, because they only radiated half your spine.
Imagine that scoliosis launches you in a world full of doctor appointments, road trips, x-rays, wet, hot plaster being wrapped around you while you lay, terrified, on a gurney with only one thin strip of material down it, and the sound and feel of the vibration of the saw as it cuts the hardened plaster off of you. You cry and scream and try your best to wiggle free, but hands hold you fast. You don’t remember the faces that go with these hands, only the feel of them, their vise like grip. You don’t know how many times you have to do this. You lose count, but it was every time you grow out of the old brace. You have to wear it twenty three hours a day, even to bed. It’s the most uncomfortable thing ever, and because your hips are so boney, the brace rubs and bruises them easily.
Imagine this is when everything started changing for you at school. 3rd and 4th grade were all right, but fifth grade to eighth grade were awful. You were bullied. You cried nearly every day because you don’t understand why you were so different than everybody else. You ask your parents why all the time. Why am I like this? Why can’t I do the things that come so easily to my siblings? And then finally, why did I have to get cancer when I was a baby? Unfortunately, there are no answers, though your parents ache to give them to you. When you are fourteen, you have a partial spine fusion, and the recovery almost kills you because you come down with pneumonia. But you end up walking away from that, and you get rid of your twenty three hour a day brace for good nine months later.
And imagine it’s not over, not by a long shot. The hits keep coming and you keep punching your way through them and getting back to your feet. Over the years, you have a few more surgeries, as well as one to remove broken rods from your back. And imagine they present you these broken pieces in a biohazard bag as if they were trophies. These were why you were in pain, and now that they are no longer in you, your pain should be gone. Since when has anything been that simple for you, though?
Imagine feeling so lost in a world that is too quick for you to keep up with. By the time you get over one hump, everyone else is still miles away. But eventually you learn that it’s okay to go at your own pace. You don’t have to keep up with everyone else. And knowing that it’s okay frees you. You open up like a flower in the spring. You still ask why. But your questions aren’t for you anymore. They’re for the other children fighting the same battle you fought. Yes, even after everything that happened to you and is still happening, children are still getting diagnosed with cancer. They are either living with the consequences of getting adult drugs pumped into their tiny bodies, or they are no longer here.
Can you imagine all of this? I don’t have to because this is my story. I’m a neuroblastoma survivor with brain stem damage due to coming down with viral encephalitis when I was still on treatment. I have worked so hard to be where I am today, and still it doesn’t seem like enough. I want to do and be so much more than I am today. I’m working on it, and I’ll get to where I want to be eventually. But for now, I’m fighting, not for myself, but for the children who are battling cancer today. Nothing much has changed in the way childhood cancer is treated since 1983 and 1984 when I was sick.
One fifth of children with cancer won’t live to grow up. Two thirds of the children who survive cancer are like me, with side effects and health problems. And every day, about forty three more children are diagnosed. There are about a dozen or so types of childhood cancer, with a hundred subtypes, and yet the National Cancer Society only gives less than 4% of their annual budget to ALL forms of childhood cancer. Kids with cancer truly do get the short end of the stick when it comes to research and drugs and cures.
I wouldn’t wish my childhood on anyone. I was loved, of course I knew that, but I was not always happy or comfortable, and there were so many nights when I’d lay awake and wish it could be different for me in the morning. Or I’d imagine our cul-de-sac was a train and I’d wake up and be in a different place with a chance to start fresh. I’d wish that I would wake up and have everything I’ve been through be a bad dream. I’d wake up healthy and strong and ready to take on the world. But guess what? I am healthy and strong and ready to take on the world anyway.
Danielle A. Cloakey
Editor’s Note: Meet Danielle! When I was 15 and a half months old, I was diagnosed with stage 4 neuroblastoma, and given only a 10-40% chance of living until my 6th birthday. After 2 major surgeries, chemo, and radiation, when I was two, I came down with viral encephalitis. My immune system could not fight it because it was wiped out by chemo, and the infection ended up damaging my brain stem. I had two horrible ear infections that nobody caught, so maybe that had something to do with it as well. After this, I lost my strength, my voice, most of my hearing, and my ability to swallow. I always thank God that I’m not an only child because I don’t like to think about where I’d be without my two younger brothers and my sister, who helped show me the way back to myself. People always think I have cerebral palsy, but I wasn’t born with it. It is very similar to it though. I struggle daily with my side effects from treatment, which include disabilities, hearing loss, a speech impairment, radiation-induced scoliosis, I graduated in June 2004 from Central Washington University with a Bachelor of Arts in English (literature). I have always love writing because it gives me a clear voice. In late 2010, I learned the truth about childhood cancer and I have been an advocate ever since.