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I Want You to Change the Story

September is Childhood Cancer Awareness month. Most people in the childhood cancer community are aware of this, but outside of our "world" few people know about the gold ribbon.
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Two years ago I wrote a post titled "The quiet rumbling that turned into a roar."

I began by saying: This post is happy and it's sad. It's about hope, about taking action, about letting go, about grief. It's about life, and death, and everything in between.

I wrote about a boy called Adam. A boy I never met, and never will. Two years ago, Adam passed away after fighting a cancer called neuroblastoma. His dad had been helping me find information online about treatment for this deadly disease, that my close friend's daughter Zoé was also fighting.

Two years ago when I wrote about the importance of raising awareness about the need for research, Zoé was 4 years old, full of energy and looking forward to starting school in September. She did get to start school, and was so incredibly proud. A few weeks later I sat with her parents in the doctors office as they were told there were no other treatment options left. The last time my son Elliot and Zoé saw each other was at the hospital for his post-treatment CT scan and check up. Zoé was in for a blood transfusion, and she teased him about being nervous getting the finger-prick blood test. They sat giggling together when the nurse let Zoé play assistant to put the bandage on his finger. We watched them silently, we parents - my son in remission from stage 4 cancer, my friend's daughter with the invisible clock counting down as the cancer in her body progressed.

Zoé passed away in her mother's arms 9 days after the wonderful photo of her giggling on the pink carpet was taken.

September is Childhood Cancer Awareness month. Most people in the childhood cancer community are aware of this, but outside of our "world" few people know about the gold ribbon.

In the 1950s the New York Times refused to print an ad for a breast cancer support group. The subject was too distasteful. And plus, there's THAT word (you're wondering, was it the word "breast" or the word "cancer"? Me too!) Back then most women who got breast cancer died. Now the survival rate is over 85%, and people proudly wear the pink ribbon everywhere. October being international breast cancer awareness month, major monuments are lit up in pink lights to raise awareness. Don't get me wrong, this is so incredibly great it makes me want to jump for joy.

It makes me think of this quote by Margaret Meade: "Never doubt that a small group of thoughtful, committed people can change the world; indeed, it's the only thing that ever has."

But childhood cancer still remains in the shadows, and research is largely underfunded.

Although I have been to the pediatric oncology unit hundreds of times in the last few years with my son, and have met hundreds of kids in treatment, Adam's death was the first that actually knocked me down with sadness, and then finally motivated me to get up and do something. It was the first time I had followed the very real story of a child, and hoped with all of my being that somehow a cure could be found. I never met him or his family, but read his dad's updates and kept hoping against hope that they would find a treatment somewhere that would work. Most likely, this came from an improbable assumption that if they could cure Adam they could certainly cure Zoé. His parents did absolutely everything in their power to cure him, researched treatments all over the world and travelled far from home at great costs to try to save him. But the cancer was faster than the cure.

The unfairness is so bitter I can taste it.

Two years ago, after he died, I wrote that I needed to believe that if that boy had been born today, we could save him this time. We could come up with some new treatment before the cancer got to him.

But after Adam, there were more.

More kids here in Switzerland, children who's parents I knew personally, kids who had played with my kids. More of my online "virtual" friends losing their children after following the same road as Adam and Zoé.

Two years later, the story is repeating itself again and again. More children are lost every day to cancer than any other disease.

And there is nothing we can do about it.


Or is there?

I'm not a doctor, not a researcher.

Who am I, to try to fix the world, little me in my little corner of Switzerland? What can I do?

But wait. I can at least try. Gold in September? Raising awareness? Ok.

Here is the mini-version of the story of what I did two years ago, to try to make a difference.

I was sitting at home, feeling sad and angry. Adam, a boy I had never even met, had just died. Zoé's latest tests showed the cancer was progressing, despite throwing two kinds of chemo at it.

So I was thinking dark thoughts. And thinking about Tony Stoddard's son Cole, who had said "I'm not going to grow up to do anything!" before he also passed away from neuroblastoma. Cole's dad has been instrumental in raising international awareness for childhood cancer. Cole did do something - something big.

What could I do?

I live in the French-speaking part of Switzerland, in between Geneva and Lausanne. What kind of monument or landmark is symbolic of our region? What could we, here in our corner of the world, turn gold to support childhood cancer awareness?

What represents this area of the world, and is known and recognized internationally?
Well... I sat and thought a bit. I tapped my nails nervously on the table as I thought it over. A crazy idea. There's no way it will work, they won't say yes anyway. There's almost no point trying...

The Jet D'eau, in Geneva, is a historical landmark. In existence since 1886, this huge water fountain can be seen from far away, even from flights at 10,000 meters above.
And they light it up at night.
What if I asked them to turn it gold in September? At least for a day?
No, I'm thinking crazy thoughts there, why would they do that for me?

But hey, I'm also an eternal optimist.
So I said to myself (not out loud) "Why not? The worst thing they could do is say no, right?" (Well actually the worst thing they could do is laugh hysterically at me and print my photo in the local paper with the headline "Canadian woman loses mind in quiet, conventional Switzerland").

Fine. I'm going to do it anyway. For Adam, who couldn't be saved. And for the baby born today who isn't even diagnosed yet. Because there is a baby being born right now, who's parents have no idea yet...Can we save him? Can Adam's battle somehow mean that this baby stands a chance?

And I'll do it also for all the kids in the Geneva hospital right now, just a few minutes walk from the Jet d'eau. And all the kids in the Lausanne hospital, where I was last Monday with my son for his CT scan, worrying. The Lausanne hospital, where I sat the same day Adam died two years ago, with Zoé's mom, on a balcony perched beautifully overlooking the city and the lake and the Jet D'eau off in the distance, having a coffee and digesting the bad news about Zoé's latest tests. For the other mom who joined us on that balcony, looking scared and exhausted, and for her son who has the "good cancer", a leukemia with a cure rate of 80%, but who is fighting for his life because of a massive fungal infection caused by the low-immunity from the treatment. I can at least try to do something to make people know that our kids need a voice. They need to be heard, they are crying out to be heard.

So I looked up the people who are in charge of the Geneva Jet D'eau. It took a little research. I found out who to contact. I made my pitch.

My pitch was nothing very spectacular. Basically, I told them I had a kid who had had cancer, and was in remission, and that it was the worst experience of my life, and that many parents of kids with cancer would love to be as lucky as I was... And that I would really really like it if they could light the Jet D'eau gold for at least one day in September.

And guess what.

They said yes.


That was two years ago. The Jet D'eau will once again be illuminated in gold this year, as it has been every year in September since then

And I need to know it is making a difference.

So here's what I want.

Two years ago I asked if it would be possible to save a child born on that day, diagnosed with cancer at age 5, like Adam. Now two years have passed. Have we made a difference? That imaginary baby has just turned 2. In 3 years he gets the diagnosis. His parents enter the cancer world. His siblings grow up way too fast. He goes through months to years of treament that affect his future growth, hearing, fertility, motor skills... If he is lucky enough for them to work.

Can we change the story?

Does turning a symbolic landmark gold for the month of September make a difference?

You tell me.

Let's change the story of my imaginary baby.

Raise your voices for childhood cancer.

In honour of Adam, and of Zoé, who hopefully, are playing together somewhere up there.