Category Archives: Non classé

My son survived – why bother pushing for research?

Beautiful boy

 

A few months ago I attended at conference on Accelerating the Development of New Oncology Drugs for Children and Adolescents. The first day was packed with fascinating, complicated presentations all revolving around the issue of how to get new drugs and new treatments available in order to save more children with cancer.

Later that evening, I sat in the bar with several parents, oncologists and industry reps, as we discussed the need for research.

Many of the parents attending that meeting had lost their child to cancer. They were there because they are committed to making a difference for other kids-  the kids diagnosed today, the ones of tomorrow.

At one point, a person (not a cancer-parent) asked me why, since my son had survived, I was so committed to advancing research.

It’s one of those questions that, when asked, feels like the answer is so obvious that you actually struggle to put words on it.

Why am I involved? Is it my place to be part of this battle?

My son Elliot was in treatment for almost a year, along with several other kids. I made good friends during those long days spent at the hospitals, friendships are forged in those difficult moments that are unlike any from the outside world.

Even my online friends, many of whom I actually met for the first time at the conference in Brussels, feel like people I have known for ages.

And it’s true, while many of these friends have lost their child, mine survived.

So I don’t have the grief that they do. I don’t have that intense pain that they all carry and hold tight within them, surviving every day, every moment, by taking one step at a time.

I feel incredibly sad for the loss of their children but to say I feel anything remotely close to what they feel would be wrong.

I don’t have the grief they carry. I am so incredibly lucky, because it is a grief that is incomparable to anything else, that I can sense and understand, but not really feel.

But I do grieve. I am sad and angry. Sometimes overwhelmingly so. Just not for the same reasons.

I don’t grieve for the loss of a child.

I grieve for them. These parents. These moms and dads who have suffered the loss of a child. My friends, who suffer, and will continue to suffer, even though they all bravely get up every day and choose to make the best of the day and try to look for the sun shining.

While I may not feel the loss of a child, I know what it is to visit a little girl’s grave with her mom. To pick a few weeds from between the flowers, to straighten the candles and dust the light snow off the little teddy bear sitting there. I know what it is to talk to someone who’s child had the same cancer as Elliot and didn’t survive. The injustice. I know a friend relives the last moments of her child’s life when she closes her eyes sometimes at night. I have another friend who is haunted by those last moments because the palliative care was not up to par. I have a friend who was by her son’s bedside when I first started to write this article (it always takes me several days to complete as I proofread several times) for his last few days, as the osteosarcoma he had could not be cured. He’s gone now.

Osteosarcoma, which has seen almost no change in treatment in decades. The same chemotherapies thrown desperately at the same cancer cells, which hold them back for a little while until they adapt and come back even stronger.

I feel such anger, sadness and frustration about this.

I don’t want to watch any more moms lose their child. I don’t want to hear any more dads talk about their daughter in the past tense. I can’t. I won’t.

I have to make a difference.

That’s why.

 

Awareness = Action ?

 

 

Yesterday, February 15th, was International Childhood Cancer Awareness Day. Many amazing awareness campaigns took place, and two in particular are so brilliant I have watched their youtube videos several times over:

TheTruth365: A National Movement

Child4Child- We Are One

I am honoured to have been able to take part in sharing and promoting these awareness campaigns.

Awareness is crucial.

Too many people still don’t know the facts about childhood cancer.

It is considered rare, and statistically speaking, it does fall into the rare diseases category.

But childhood cancer is the leading cause of death by disease in children. The number one cause.

To me, that’s not rare.

Getting struck by lightning is rare.

Winning the lottery is rare.

The number one cause of death by disease? Not rare.

What are the odds of a child having cancer before he turns 20? Try to guess at the answer, I’ll give you a hint: it’s either one in 300, one in 3000 or one in 30000 kids will be diagnosed with cancer before they turn 20.

Stumped? Or you kind of have guessed but can’t really believe it because it just seems so… un-rare?

That’s right, it’s one in 300.

Here in our very tiny country of Switzerland, which is so small it would fit into one of our Great Lakes in Canada (possibly the tip of an alp might stick out here or there), one child dies of cancer every week.

Not rare.

And yet, most people still don’t know about it.

Which is why raising awareness is so important. February 15th is childhood cancer awareness day, and September is childhood cancer awareness month. (Nobody in the childhood cancer community is quite sure why there are two awareness moments, but we’re going with it.)

Now let’s talk about action.

Yesterday, on February 15th, you became aware. Today, on February 16th, and every day after, you take action.

Awareness must lead to action.

The founding members and supporting organizations of Unite2Cure have an action plan in order to change the way research into childhood cancer is prioritized. We have a plan to turn this amazing awareness into action.

The time for action is now. Share this post, share this page, sign the petition, and stay tuned for the next step.

After Paris, Look for the Helpers

“When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.” — Mister Rogers

Again.

The feeling of anxious dread mixed with a horrible need to know.

It starts with a message from someone telling you something has happened, and a link the news story. This time it was my son who sent me a message at 1am, which I only saw when I noticed my phone blinking at 3am.

Paris under attack.

Heart sinking. Not again.

By the next morning it’s the only topic in the news and on social media. People are changing their profile pictures in support, or in anger, or conversely criticising those who do. Some write out in detail their opinion on why this happened, who is to blame, what needs to change.

Virtual arguments flare up in comment-form under people’s posts. I feel the anger wafting out from facebook like the computer is on fire.

Stop. Some people are in mourning today. Some people didn’t make it home last night.

As a mom, my first thought in moments like this is for the moms who were given the bad news that their child is dead. And the moms who are panicking, sending out endless messages searching for their child who hasn’t come home yet…

Our social media, the very one we cling to when we look for information, is partly to blame for our overwhelming feelings of personal tragedy – we live vicariously through the people actually present on the scene.

And yet, overwhelmingly, in the face of terrorism, people are not terrorized. Shocked, saddened, horrified, outraged, yes.

Angry. Worried.

Defiant. Resistant.

Because, ultimately, there will always be more good guys than bad guys.

Remember Boston? The horrific scenes of the marathon, the chilling tales of people recounting their experiences that day?

On some of those photos, you can see people running TO the scene.

To help.

I was in London in 2005, one day after 7/7, when 56 people died and over 700 were injured by bombs on the underground and a bus. The mood of the city was electric and tense, the sun kept trying to break through the heavy steel clouds, but gloom pushed down on us. People were in shock, people were scared. But also… People were kind.  Everyone seemed to be going out of their way to show kindness and patience to others. People held doors, waited patiently instead of grumping, said thank you, let others cut ahead in line, smiled at each other, made eye contact. There seemed to be a subconscious current of niceness having struck the city. Engaging in small acts of care towards other strangers was therapeutic.

Friday night in Paris one of the hashtags that quickly went viral was #porteouverte. Because of the sudden police-imposed curfew, many found themselves in the city, far from their home or hotel, and unable to get back.

#Portesouvertes

In an amazing show of solidarity, the people of Paris opened their doors to anyone needing shelter. Hundreds of connections were made online between people needing shelter and those opening their doors to them. Taxis also turned off their meters to help out when the public transit was shut down.

It was a moment of light in a night of darkness.

Let’s hold onto that.

There will always be more good guys than bad.