Tag Archives: Swizterland

Just keep swimming…

 

What a week. Is there anyone else out there who feels like there was no end to the bad news last week?

Adam. Talia. Abigail. Onja. Of course many more whose names I don’t know. Lives lost. Hearts broken.

I feel like running away and hiding my head in the sand.

No, I can’t run away and hide my head in the sand.

Because last week, I also had to drive to the hospital and sit in the waiting room next to my husband, holding hands but not speaking, waiting for our turn to be called in. Waiting to be given the results of Elliot’s scans.

And we were lucky. Once again, we were so very, very lucky. Because Elliot is still in remission. Whew. Exhale.

But what if he hadn’t been? Would I want all my friends to run away and hide their heads in the sand? No. That would be when I would need them the most.

So let’s stand strong and stand together.

When asked by Ellen DeGeneres how she managed to stay so positive, Talia, who was at that time fighting two kinds of cancer, replied with the line from the character Dory played by Ellen in Finding Nemo. Her answer became quite famous as Talia’s motto: “Just  keep swimming…”  I liked this. It felt like hope, wrapped up in humour.

 

A few days ago, Patrick Lacey, Will’s dad, posted a blog article mentioning that he was feeling tired. No, not tired because he has once again been forced to fight alongside his son for survival and reasonable health for his 8 year old, who has had cancer for… 8 years.

He’s “tired of chasing donors and sponsors…  tired of having to fight absurd battles against groups that somehow make it their mission to impede progress… and saddened that he is no longer surprised by these actions..”

I felt sad when I read this. After a week of bad news I really understood the sentiment, even coming from a person who is normally optimistic and always inspiring.

Patrick is tired, and we are all tired with him.

But let’s listen to Talia.

Just keep swimming.

September is turning gold. Just follow “A Day of Yellow and Gold and you’ll be amazed. People are paying attention. The TRUTH 365’s facebook page has almost 26,000 followers. Even my own blog post of June 18th Are you sick of all this cancer stuff” had over 5000 views in 2 days.

September 22nd the Jet d’eau right here in Geneva will be GOLD for childhood cancer!

Jet d'eau Genève
Jet d’eau Genève

Research is happening. Not at the pace we want, but it is happening. There are people dedicated to this cause, and not because they have had kids with cancer. Dr. Mosse. Dr. Sholler. Dr. Maris. Dr Grupp. Dr. Matthay. Dr. Kushner. My own Dr. Beck and the entire team here in Lausanne. I know there are many more, these are just the ones I have heard about directly from other parents.   I know, Patrick, we fight for every penny, and it’s not happening quick enough to save our kids now. But there have been advances. Immunotherapy and MIBG treatment for neuroblastoma. Gleevec for AML. Limb salvage surgery for sarcomas that used to be treated by immediate amputation (have you seen this amazing video of 4 girls who had rotationplasty which allows them preserve a functioning “knee” joint, so they can still jump and run? Look at them swim! Couldn’t we wish all teenage girls would be so confident and happy about their bodies? Amazing singing voices too!)

 

And more research… St. Jude’s pediatric genome project.  St. Baldrick’s just announced it’s summer grant program: 63 grants in 17 countries for a 22 million dollars. The new “Dream team“. In France the race “Enfants sans cancer” (Children without cancer) on September 29th is expected to raise in the hundreds of thousand euros, all of which will fund a new neuroblastoma trial which will be available for kids before the end of 2013.

It really is happening. Not fast enough. And we won’t get back the ones we’ve lost. But I do believe in a better future for the next kids diagnosed.

Just keep swimming…

The governmental practices regarding funding childhood cancer research are changing. No, not fast enough. But the Creating Hope Act is a step. In Europe, the European Commission on public health has published a document entitled “Better Medicines for Children — From Concept to Reality“, detailing improvements made and future directions. In France a petition signed by over 70,000 people has resulted in a law proposal which would increase research and improve access to individualized treatments. So it is happening, slowly but surely.The laws need to change so more research is funded by our tax dollars as well as by the pharmaceutical companies. We need a strong advocate in that area, I personally would choose Jonathan Agin. He knows what he’s talking about, he has access to the public forum through his Huffington Post articles as well as a large following in the States and internationally. Let’s back him. Jon you up for this? Good. See, Patrick, one more thing crossed off our to-do list.

Just keep swimming…

International unity within the childhood cancer community is growing. Associations are forming associations. Look at the new Coalition Against Childhood Cancer, who’s poster says “Unity is Power”.. Borders are being crossed, whether cultural, linguistic or physical. French speaking parents here in Switzerland are writing to me to ask for translations of NB Globe articles, an international neuroblastoma information website, which Rockstar Ronan‘s mom Maya tweets about in the States. Talia’s youtube channel reached across the globe. The TRUTH 365 has gone global too, with followers in Australia, Europe, and the Americas writing to each other via their facebook comments. Supporting each other. Parents are sharing experiences and advice on an international level. Momcology members care about each other’s kids even if they live in completely separate countries. We have better access to information than ever before.

It is happening. Please don’t let the tiredness, exhaustion, frustration and sadness make you quit.

We have to just keep swimming. Because after all, if we stop swimming, we’ll just sink.

The quiet rumbling that turned into a roar.

Going GOLD for September.
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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 dedicate this post to Adam.

 I mentioned in my last post that 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.

It used to be like this for breast cancer, it was talked about very little. Now, the month of October is very well known as Breast Cancer Awareness month, there are pink ribbons everywhere (and I will most definitely be wearing one proudly!).

The White House is illuminated in pink for the month of October to support this cause. Other monuments and landmarks also will turn pink in the U.S., in Canada, in Europe, in Australia, in the world! For a cause that used to be so hush-hush, this is amazing news. Awareness of this cause has increased research, which has turned this type of cancer into something many women now survive.

This year, a group of parents have petitioned the American government to turn the White House gold for September, for kids with cancer. Other groups, like A Day of Yellow and Gold  have been working on turning September gold with great success: Niagara Falls, the CN Tower in Toronto, the Zakim Bridge,the Prudential building, the Atlantic Wharf in Boston, the Battleship New Jersey, the Ben Franklin Bridge in Philadelphia, the Liberty Bridge in South Carolina all will be lit up in gold. Major sports teams are getting on board, the Philadelphia Phillies will have a golden ribbon on their scoreboard. And there have many other plans. In Australia, support for the  GO GOLD AUSTRALIA for September action is growing like a wildfire. Just last month an amazing documentary about childhood cancer won three Emmy awards, watch it here: http://www.thetruth365.org/.

 There is a movement afoot… A movement that started as a quiet rumbling, and grew, and grew, and is now a loud roar… We, the people of the childhood cancer community, are calling out to be heard! We want to turn September GOLD, and have childhood cancer moved out of the hush-hush quietness and into the spotlight!

A few days ago, Adam, a boy I’ve mentioned in previous posts, passed away. I have been occasionally in touch with his dad in my search for neuroblastoma treatments on an international level for Zoe (www.zoe4life.org) but mostly I read his dad’s blog, hoping against hope that they would find a treatment somewhere that would work. I was at first overwhelmed with sadness when I saw his beautiful photo, still alive and healthy, looking like he was heading off to school. The unfairness is so bitter I can taste it.

 But I want to believe… no I NEED 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 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? Ok. Let me think a bit.

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 sit and think a bit. I tap my nails nervously on the table as I think it over. A crazy idea. There’s no way it will work, they won’t say yes anyway. There’s almost no point trying…
Jet-deau1
The Jet-d’eau, in Geneva, is a historical landmark. In existence since 1886, it 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? (Yes, I often have conversations with myself. Yesterday, for example, I realized that I was strangely not stressed about Elliot’s upcoming scans for his one year-post remission check up. Then I said to myself that in the past, I was always completely stressed, and it all turned out good. So then I thought, but does that mean that this time the results will be bad? So now I’m stressed. Yep, that’s right, I talked myself into worrying.)
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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”).
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Fine.  I’m going to do it anyway. For Adam, who couldn’t be saved, but who’s life was so meaningful despite being too short, touching many families going through the neuroblastoma battle even here in Switzerland.  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?
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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’ll be on Monday with my son, worrying. The Lausanne hospital, where I sat last week with Zoé’s mom, on a balcony perched beautifully overlooking the city of Lausanne 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.
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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. I actually had to make my pitch a few times, since I was not always in touch with the right person.
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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.
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And guess what.
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They said yes.
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THEY SAID YES!!!
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So if you think I’m stopping there… No way. Let’s go GOLD for September. What else can we do?
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To support neuroblastoma research go to: 
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Calendar of Hope Raises Over 16,000 francs!

The Calendar of Hope
The Calendar of Hope

 

The Calendar of Hope has raised over 16,000 francs! The money will be given to the two chosen charities ARFEC and FORCE tomorrow, February 15th, the International Day of Childhood Cancer Awareness. Here is a little video which I made to commemorate the making of the calendar: http://www.youtube.com/watch?v=nXMlzFpM0AQ