No, it’s not enough. It won’t be until there’s funding for cures.

Over the past few weeks, my Facebook and Twitter pages have been filled with posts, photos, articles, and stats related to childhood cancer. Yes, this is something I’m passionate about. When I say the stories of Isabella Santos and Ronan Thompson have seared my soul, those aren’t just words. I’m not exaggerating. I think about those two beautiful children and their parents every single day. When I try to fathom how agonizing it must be for them to have to wake up each morning and face the recurring nightmare that their child is dead, it feels like a lead weight has been hooked to my heart. I can’t even begin to imagine it. I know how awful it feels when one of my children gets sick with a simple virus or an ear infection or strep throat. But cancer? Cancer? How the hell do you wrap your head around that kind of agony?

I’ve heard all sorts of things from people about my incessant posting about childhood cancer:

“Boy, you sure are passionate about this.” (Which I take to mean, “Seriously, don’t you have anything better to do?”)

“Maybe you should start your own non-profit.” (Instead of posting on Facebook about it?)

“Your Facebook page has gotten pretty depressing. No one wants to be depressed on Facebook.” (Because dead and dying kids don’t belong on social media.)

“People are going to think YOUR kids have cancer.” (And you certainly don’t want THAT stigma!)

“Don’t you have a demanding job? How do you have time to post about all this stuff?” (Because there are much more important things to do than post about other people’s sick and dead children.)

“Don’t you think maybe it’s enough already?” (No one wants to see this shit every day. We get the point.ย Just give it up, OK?”)

As I’ve said before, the beauty of social media is that if you don’t like a post, you can ignore it. Or hide it. Or maybe, just maybe, those people who say they’re sick of seeing my posts about childhood cancer can take off the rose-colored glasses for a few minutes, really read the information in the posts, and see that for thousands of parents and children, the world just isn’t fucking rosy. Because if you’re complaining about my posts and you don’t see that yet, then you DON’T get the point. So no, it’s not enough already.

Today is the last day of childhood cancer awareness month. After today, many of the select few people who have been talking about childhood cancer will stop talking about it. At least until next year, anyway. People who breeze through my posts and don’t take the time to read about the dead or dying kids I’ve mentioned will go on with their lives because it hasn’t truly touched them yet. Is it disinterest? Denial? A simple lack of awareness? The feeling of “Yes, it’s sad, but there’s really nothing I can do about it?”

I’d say it’s a mix of all those things. Until it touches you, directly or indirectly, childhood cancer is just another illness out there. It happens to OTHER people. And as long as these kids are suffering and dying behind closed curtains, that will never change.

I’ve learned so much from reading these kids’ stories and watching their videos. I’ve learned that childhood cancer has no bias. It strikes kids of both genders. It has no mercy on infants or even embryos. It doesn’t care if you’re cute or “spicy” or funny or precocious.ย It doesn’t care if you’re Democrat or Republican. It doesn’t care what god you pray to. It doesn’t care how agonizing your treatment is. It doesn’t care about the pain it causes.

Its goal is to win. For neuroblastoma, AT/RT, alveolar rhabdomyosarcoma, and other childhood cancers, winning means a slow, agonizing, eat-a-child-alive death. Childhood cancer has no mercy. It’s strong. It’s fast. It’s lethal. It’s the scariest thing in the world.

And it’s fucking relentless.

So what can people like me do to really change things? I wish I knew the easy answer to that. But I don’t. So I’ll do the only thing I know how to do. I’ll keep talking about it, to try and raise awareness about it and make some positive use of my doctoral degree in communication.

I’ll give money whenever I can afford it to grassroot organizations like the Isabella Santos Foundation and The Ronan Thompson Foundation and The Truth 365 and The American Childhood Cancer Organization and St. Jude’s and others like them who give ALL of their proceeds DIRECTLY to funding for CHILDHOOD cancer research.

I’ll proudly wear my Rockstar Ronan “Fuck you cancer” bracelet every day and talk about neuroblastoma whenever someone asks what the bracelet is for. I’ll even offer them a bracelet of their own to wear–I bought extra.

I’ll wear my bright yellow Alex’s Lemonade Stand t-shirt. I’ll wear my Isabella Santos Foundation t-shirt and my Lane Goodwin t-shirt when they arrive.

I’ll keep the ACCO childhood cancer gold ribbon on my car.

I’ll wear my gold ribbon lapel pin every day and talk about childhood cancer whenever someone asks what it’s for.

I’ll keep posting on this blog.

I’ll keep sharing stories on Facebook and Twitter.

I’ll keep signing petitions to raise money for childhood cancer research.

I’ll keep reading the stories of children hit with childhood cancer and use their stories to fuel my passion for doing my part to help find a cure.

I’ll keep standing behind the parents who are fighting this battle now or who are fighting in memory of a child lost and I won’t forget about them as I live my life.

I will NEVER take my children’s health for granted.

I will live like a rockstar (http://rockstarronan.com/how-to-live-like-a-rockstar/) every day. Because now that I understand the horrors of childhood cancer through the eyes of parents and children who have had to endure it, I know how lucky I am.

And because I know how quickly and how easily that can change with the four most dreaded words in the English language:

“Your child has cancer.”

And until those four words can be followed by “But luckily, we have a cure,” it will never be enough.

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2 Responses to No, it’s not enough. It won’t be until there’s funding for cures.

  1. Im very new to your blog…Rockstar Ronan lead me here ๐Ÿ™‚ . Your post hit me hard..your feelings and words echo mine. I had already followed 2 blogs where the parents tragically lost their child..one to a rhabdoid tumor..a sweet little boy James (please visit jamescamdensikes.blogspot.com) died within a month of diagnosis when he was barely 8 months old. Had a gorgeous mop of thick hair and the biggest bluest eyes just like amazing Ro. That is where my introduction to pediatric cancer began, but last month when I was told by my sister to listen to Ronan and visit the website before I was having surgery and worried about dying. She said ..since I know you always cry over these kids, go read about Ronan and his poor mother Maya and your fears will be put into prospective. WOW was she right. My heart shattered for Ronan and Maya. I cried my eyes out and my heart was drowning in that puddle at my feet. I suddenly didn’t give a shit about my surgery. These poor children were suffering and dying and these tortured parents left to live on when they in fact they had died along with that child. Why wasn’t more being done? Why was breast cancer awareness shouted from the roof tops but other than crying when I was younger watching the St. Jude commercials, pediatric cancer was never spoken of? Since reading about Ronan and obsessively reading his blog and following him and mama Maya on twitter, I have become calmer and appreciative of every second I get with my darling 3yr old son. I started following other innocent children battling this fucked up disease. The Jesse Rees Foundation, Avalanna, Dyrk Burcie, and about a dozen other children who lost their precious lives. I have no words, just crushing sorrow. Not being a rich person, I can’t donate too much. But I have made it my personal mission to spread awareness whenever and wherever I can. People give me the same …why should you care, your son is healthy crap. Just because these aren’t my children, I love them as they could be, every child deserves that. I rather have a big heart than a empty cold one as these idiots. Im sorry for the rambling, your post just seriously hit home and touched my heart. I want to join your army and Never Give Up (NEGU Jesse Rees) on these kids. I will live my life as a Rockstar and do everything I can for these children and families suffering. Thank you again for the inspiring post and basically being you, an amazing compassionate human being. Boy do we need an army of you in this world. Keep fighting, im by your side ๐Ÿ™‚

  2. alyselancaster says:

    @angerbecomesme Maya Thompson is definitely accomplishing her goal of making people aware, since she, too, brought me here–to writing this blog. It’s good to know that I’m not alone. Not that it matters. Becasue I’ll keep right on talking about childhood cancer awareness anyway. ๐Ÿ™‚

    I think it’s BECAUSE we have healthy kids that it’s important we spread the word. Isn’t that what Maya says in her blog all the time? That hiding from the horror of it doesn’t mean it doesn’t exist? All I know is that after reading all these kids’ stories (I checked out Jesse Reese and she was an absolutely GORGEOUS girl…another in a long line of beautiful children who died way too young…), it’s simply impossible for me to go on living in ignorance. Not when so many kids and their parents are suffering so much.

    I’m not rich either. But I remember reading in one of Maya’s blog posts that is every one of her then-6 million readers (she’s now over 7.3 million) gave $5 or even $1, think of how much could be done for childhood cancer. She taught me that you don’t have to give millions to help (though in the words of Erin Santos, whose 7-year-old daughter died in June of neuroblastoma after an agonizing 5-year fight, if you have a rich uncle die, have him leave the money to find a cure for childhood cancer). Just a few dollars and a whole lot of social media talking can go a long way. Which is why you and I are here, I guess. And I’m sure there are others out there like us. Hopefully, over time, we will all band together and help raise money for a cure…Until then, we just pray for these kids and their parents and make sure others learn about them and do the same.

    Thank you so much for your kind words. It looks like we’re in this together! ๐Ÿ™‚

    Alyse

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