We used to live on a cul-de-sac when I was younger, and every night in bed, I used to pretend it was a train taking me far away. And every morning, I’d be in the exact same place with the exact same problems.
I’ve never shared this before. It was mine. It was how I coped with being stuck in a body that I viewed as broken. How I coped with being a survivor of something I could not remember. Every day, a new place. Every day, another chance to be whole. Except it never happened. It was all in my imagination.
Imagine the thing that tried to kill you when you were a child being allowed to run rampant. Think of it as a serial killer, because that’s what cancer is. And nothing is really being done about it! It’s killing babies, toddlers, young children. It’s killing kids before they have a chance to be teenagers. It’s killing teenagers before they really experience life.
And it’s not okay! It could be your child. My story could be your child’s. Stage 4 neuroblastoma. Chemo. Radiation. Viral encephalitis. Damaged brain stem. Permanent disabilities. Hearing loss. Speech impairment. Scoliosis. Surgeries. All before I turned three. And then when I was 9 or 10, my back was bad enough to warrant a brace, which I had to wear 23 hours a day for about 5 years. It wasn’t fair.
I cried nearly every single day because I didn’t understand. I didn’t understand why I was like this. I didn’t understand why I couldn’t make myself be better. I looked at my siblings and my peers and it all looked so easy… and yet, I couldn’t do any of the things they were doing. So I escaped. I loved reading so much I started writing my own stories, creating my own worlds.
And I’m still doing that today. But I also live in the real world too, where kids are being diagnosed every day and dying too. I see this and it breaks my heart. I don’t think it was ever supposed to be this way, but it is. Back when I was diagnosed with cancer, my parents accepted what the doctors told them – that childhood cancer was rare. Today, we have the internet though. And social media. And I know better than to believe what the doctors say. My eyes and ears and heart are telling me different. My head is telling me different. My friends are either grieving for their children or fighting for their children’s lives. And you know what else? They are also the ones fighting to get more money for research AT THE SAME TIME they are fighting for their children and/or grieving. It’s a way they can continue taking care of their children after their babies are gone. But the truth is, they shouldn’t have to. Their children should still be here.
The National Cancer Institute only reserves 4% of federal funding for childhood cancer, with adult cancers getting the rest. There are 16 different types of childhood cancer, with 100 subtypes. How in the world is 4% enough to cover that? Brain cancer in children is often terminal. They are treated with made-for-adults drugs because there is not enough money for targeted treatment. And sometimes these drugs kill them. Sometimes they leave the children with long term side effects. Cancer does not discriminate. Any child can be diagnosed. Approximately 43 children are diagnosed every day. 7 more children die every day. Tomorrow, it could be your child, or a child you know. And that’s just here in USA. Worldwide, the number grows. Please stand up as fight for the children.
You can help be their voice! I realize there are a ton of worthy causes out there. But please, if you care about the future, if you care about children, please go like TheTruth365 page on Facebook and read some of the stories there. If you are on the east coast, there’s an annual Curefest Weekend September 16th and 17th in DC at the National Mall. I went last year for the first time despite living on the west coast. It was amazing. There’s a march. There’s a candlelight vigil at the White House. There’s a walk around the Mall. And there’s speeches, booths, etc. I’m planning on going back this year, and we are hoping it won’t be just us advocates there. We need the public involved to make our voices louder. We need a worldwide movement like the Women’s March that took place in January.
Come join our movement. Come listen. Come learn. I always say I would not wish my childhood on anyone, and I will keep on saying it. Forever, if necessary. I’m a childhood cancer survivor, yes, but I never should have had to fight that way. I shouldn’t have to live this way. Childhood cancer is a reality for many. Please don’t wait until it is yours too.