Not Like the Other Kids

by Danielle A. CloakeySurvivor, Neuroblastoma, Stage 4September 16, 2019View more posts from Danielle A. Cloakey

I was not like the other kids, my grandma once told me. Her old cat, Cinder, always preferred me to my siblings and cousins, because I was gentle and I wasn’t constantly grabbing at him. The Christmas after I turned two, which was the Christmas after I was diagnosed with stage 4 neuroblastoma, my other grandparents got me a cat named Daphne. I had her for about 5 years before she ran away, never to be seen again. I remember waiting expectantly at my grandparents’ and the look on my dad’s face when he came back from searching and told me that he just couldn’t find her. I was disappointed and upset, but I didn’t cry. I was seven years old, and I just hoped that wherever Daphne was, that she was happy.

Empathy for pets quickly morphed into empathy for people, both real and imagined. After my cancer treatment protocol, after viral encephalitis damaged my brain stem and left me with physical disabilities, hearing loss, and a speech impairment, I was rendered an observer of life, rather than an active participant. As a child, I read a lot, preferring to explore make-believe worlds where I could actually BE the characters instead of myself. And I feel like I can relate a lot to others, because of this. I loved classics like “The Secret Garden,” and “A Little Princess,” both by Frances Hodgson Burnett. In “The Secret Garden,” a bedridden, fearful boy is healed by the “magic” in his deceased mother’s (secret) garden. I wanted to be healed too, in body and soul both. And I looked for stories written about kids with cancer, sick kids, both true and fictional. And maybe in reading stories like this and in empathizing with the characters, I started the process of healing in my own way.

One night in October 2010, I couldn’t sleep, and I got up and went to my computer. I ended up Googling neuroblastoma, the cancer I had when I was a baby. This was not out of the norm for me, because I was constantly searching for answers about what happened to me as a baby. I have no memories of being sick, no memories of having a healthy, “normal” body, and I was kinda obsessed with googling it. That night was different, though. That’s when I found a blog by a mother of a child with cancer, the same cancer I had. And I read that whole blog back to the day she started it that night. I learned the truth. Whenever I asked my parents about childhood cancer growing up, they would look at me and shake their heads, and repeat what they had been told back in 1983: that childhood cancer was rare and it was just a fluke that I got it. I drew the short straw, so to speak.

But that cold, sleepless October night, I learned that approximately 47 children are diagnosed with cancer every single day, and that 7 children succumb to their cancers every single day. I learned that September was Childhood Cancer Awareness Month, and the color of the childhood cancer awareness ribbon was gold. And what’s more is that the National Institute of Cancer only gives less than 4% of the research money they get to childhood cancer, despite it not being just one disease but rather 12 plus types of cancer with 100 subtypes.

I got so mad. I was shaking I was so overcome with emotion. I turned to Facebook, because the mother of the sick little boy had one, and I sent her a friend request. I’d send her a message months later, after her son died, and told her how sorry I was and how much Ronan had touched my heart. I also told her (I really hesitated to tell her this) that I was a neuroblastoma survivor. She wrote back almost immediately and told me how happy she was to hear that I was a survivor, and that she was certain that Ronan and I shared a secret between our souls.

It made me cry, that message, as I am sure mine made her cry. After Ronan died, or maybe it was before, I started looking for more kids, and I found them. The sheer number of them i found on Facebook and elsewhere on the internet shook me to my very soul. I could not believe this. I started posting about childhood cancer on my profile, and it eventually grew into me starting a page just for awareness purposes. This turned out to be a good thing, by the way. Instead if it just being me looking for them, now parents of children with cancer were seeking me out, asking me to share their children’s stories and pictures. And I did.

Most of the children I found back in 2010, early 2011, are gone now. If there’s one thing I learned the past nine years, it’s that childhood cancer is NOT rare at all, despite what the doctors would tell you. Now, in 2019, this will be my fourth year going to CureFest in Washington D.C.

I have listened to grieving mothers as their voices shook with emotion recounting their children’s fight. I have hugged bereaved parents and met other survivors, one of whom will be missing this year because she died back in April. Loretta survived Wilms’ Tumor as a child only to battle a secondary cancer decades later. This second cancer, a sarcoma,¬†popped up because of the radiation treatments she had to treat her first cancer. I remember the first thing she said to me when she saw me in person for the first time: “Danielle? I thought that was you.” She had a big smile that I’m going to miss seeing so much this year.

Because of my speech impairment due to the brain stem damage, I really don’t like to talk much in public, but I remember looking over during one of the Marches to the Capitol in Washington D.C., I think it was two years ago, and suddenly seeing Abri beside me, in a wheelchair, with her leg “Stumpy” propped up on pillows. She had limb salvage surgery because she was diagnosed with Ewing’s Sarcoma, and was fighting still to regain some since of normalcy. She was nine years old at the time and was this tiny blonde girl. I would have recognized her anywhere. I just reached out and took her hand. We shared an intense moment, just looking at each other, though not a word was spoken.

There are other children, the ones that I did not get a chance to meet, like Gabriella Miller, who I feel and hear every single day regardless of not having known her when she was here. Diagnosed with DIPG at nine years old in November 2012 and passing away 11 months later, she was a such a fierce voice for cancer kids, despite her being so young. In one video she says rather passionately, “If I go, if I lose my battle, then I want other people to carry on with the war. They’re going to win this war.” I heard that not only with my ears, but with every single cell in my body. Sadly, Gabriella passed away two weeks after saying that. Yes, sweet girl, we are carrying on with the war, and we’re going to win, no matter how long it takes.

I think Ronan’s mom was right. I think my soul is connected to all of these precious children. That’s why I can feel them inside, and that’s how I know that my life isn’t wholly my own.

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