Imagine for a second that what tried to kill you as a child still runs rampant today, wreaking havoc and destroying lives. Can you see it? Welcome to my reality. I am not arguing that cancer is not a monster, because it is. It crept into my life a few months after my first birthday, and its greedy fingers have not yet let go even today, 34 years later.
I was diagnosed with stage 4 neuroblastoma on my mother’s 24th birthday, January 13, 1983. I had been walking funny, holding on to walls and furniture to maintain my balance, and falling down a lot. All toddlers walk funny, a nurse told my concerned mother at my regular checkup. It’s nothing to worry about. But after the nurse saw me walk, she noticed that I hyperextended one of my legs and she thought there was something wrong with my hips. I was seen by a pediatrician and he was concerned that I might have a brain tumor, because one of my eyes was crossed. A CT ruled that out, and I was admitted to Seattle Children’s Hospital for urine collection. When my numbers came back abnormal, they used an ultrasound and found my tumor. It was attached to my right kidney, extending to my left, and partially wrapped around my aorta. There were cancer cells in my lymph nodes too. It was stage 4 neuroblastoma.
My treatment protocol included 2 major surgeries, chemotherapy, and some radiation. I fought every procedure when I could – I didn’t understand why these things were being done to me, why they continued to be done to me. They had to tie every inch of me down for radiation, just to get me to hold still. Sometimes the nurses would come into my hospital room to find me with my favorite blanket covering every inch of my body (I figured if they couldn’t see me, they couldn’t do anything) except my head. I screamed and cried “non’t!” it was a combination of no and don’t to get my point across, but it never worked. Everybody else was bigger and stronger than me and I cried so much. Music was the only thing that seemed to soothe me. I loved Michael Jackson the most. When I lost my hair to chemo, it made me so mad I took to wearing bonnets and hats in public.
In May 1984, I was taken to the hospital burning up and screaming that my legs hurt. I had viral encephalitis, and because I was still getting chemo, my immune system was wiped out and I couldn’t fight it. The infection escalated and damaged my brain stem. I spent about two weeks in the ICU in a semi coma, though I would have moments where I would wake up and just cry. When asked if I wanted to be picked up and held, I would vehemently shake my head. My body was limp and the thought of being picked up when I couldn’t hold my head up terrified me.
The damage to my brain stem was permanent. People look at me today and think I have cerebral palsy, and that’s fair. But I wasn’t born like this. I became like this because of childhood cancer, because nobody knew anything about treating cancer in kids back in the 1980s. Even today, they don’t treat it like they should because childhood cancer only gets less than 4% of federal funding. I was treated with made-for-adults drugs, and kids are still being treated with the same drugs. 43 children are diagnosed every day, and 7 more children die in the USA. Worldwide, those numbers only get larger, and it’s not okay! The media calls it rare, but it’s not. They just say that because it makes people feel better, to know that THAT child got it, and not theirs. I was one of those children on January 13, 1983.
Cancer changed my life in irrevocable ways. I always say, I wouldn’t wish my childhood on anyone, and I will never stop saying that. The right side of my body was affected the most by the damage from the encephalitis, and I have balance issues. I was once right handed, but now my left is my dominant hand. I have hearing loss, a speech impairment, and scoliosis due to radiation damage. At age 35, I still live with my parents. I can’t drive. I can’t work because my communication skills are limited, but I can write, and I can be a voice for the kids who have cancer today. And I am.
Danielle Cloakey is a childhood cancer survivor and advocate who loves reading and writing.