Zoe4life, for kids with cancer

Zoé4life donates 150,000 francs to childhood cancer research

In less than three years, Zoé4life has funded over 430,000.- francs of research into childhood cancer in Switzerland. This is an amazing accomplishment for a non-profit organization run entirely by volunteers.

It was with great honour that the members of Zoé4life’s executive committee anounced their continued support of the Swiss Paediatric Oncology Group.

The Swiss Paediatric Oncology Group (SPOG) is an association whose objective it is to advance clinical, i.e. directly patient-focused paediatric cancer research. Its members are hospital departments in Switzerland that treat children and adolescents with cancer.

SPOG works nation-wide in Switzerland and maintains intense cooperation with leading international research groups.

Zoé4life supports the Swiss Paediatric Oncology Group within their specific research to better treat cancer in children suffering from a relapse. Through this financial support, new research projects are being launched more rapidly.

The cheque awarded by Zoe4life to this specific project represents a year’s worth of work to raise funds.

In Switzerland, a child dies every week from cancer. Zoé4life is committed to accelerating research in order to cure more children and ensure survivors have a better quality of life.

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Day4Life

 

Zoé4life hosted an awareness and fundraising event in the beautiful lake-side town of Rolle on October 1st 2016! This team-building and family-friendly event marked the closing of September, International Childhood Cancer Awareness Month, during which many awareness activities took place, including the illumination in gold of Geneva’s Jet d’eau for the 4th year in a row. Gold is the symbolic colour representing solidarity for children with cancer – the number onecause of death by disease in children.

 

Day4life was a day of solidarity, which encouraged the people of Suisse Romande to show their support for this cause, while also enjoying a fun day of various activities by the lake. It was also be an excellent opportunity to take part in our team-building event for groups and organizations wishing to strengthen their interpersonal bonds while engaging in a challenging afternoon, all in the name of a great cause. As Zoé4life’s motto states: Together, we can make a difference!

 

 

Our celebrity ambassador:1529294_pic_970x641

Jean-Marc Richard, well know television and radio show host, gave us the honour of being our ambassador for the event. Jean-Marc Richard is already quite active as Switzerland’s ambassador for the Rights of the Child since 2006. He chose to support Zoé4life and this event for the following reasons:

 

“I am deeply moved by the fact that Zoé4life was able to turn a tragedy into an active, extremely well-known organization that benefits so many.”

 

The event had two main parts:

“Zoé’s Village”

Zoé loved to laugh, but even more than that, she loved to have fun, see people, play, and live every moment of her life to the fullest. Zoé’s Village, which was set up in the courtyard in front of the historic Rolle Castle,  represented that joy for life, a place where people came to meet-up, share a meal or a drink, spend time together, or take part in one of the many activities for all ages.

Some of the many events and activities:

  • Evening concert by the popular local group « Les Pseudos »
  • Capoeira initiation and demonstration
  • Zumba for kids & Zumba for adults
  • Cupcake workshop for kids (The Melazic Kingdom)
  • Information booths about Zoé4life and other partners
  • Food and beverage booths

 

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“Zoé’s Challenge”

A team-building event like no other – fun, challenging, lightly competitive but accessible to anyone – this was the event to sign up for to show that together, we can make a difference.

 

Based on the principles of an orienteering race, this event saw two dozen teams of four to eight people each competing, using maps and clues, to find their way to special posts throughout Rolle as they raced to complete the challenge. They encountered various obstacles, tests and trials and ultimately made their way back to Zoé’s Village for one last challenge.

 

 

 

Zoé4life donates 150’000 CHF to childhood cancer research

It was with great honour that the members of Zoé4life’s executive committee anounced a new partnership with the Swiss Paediatric Oncology Group.

The Swiss Paediatric Oncology Group (SPOG) is an association whose objective it is to advance clinical, i.e. directly patient-focused paediatric cancer research. Its members are hospital departments in Switzerland that treat children and adolescents with cancer.

SPOG works nation-wide in Switzerland and maintains intense cooperation with leading international research groups.

Zoé4life supports the Swiss Paediatric Oncology Group within their specific research to better treat cancer in children suffering from a relapse. Through this financial support, new research projects can be launched more rapidly.

The cheque awarded by Zoe4life to this specific project represents a year’s worth of work to raise funds.

In Switzerland, a child dies every week from cancer. Zoe4life is committed to accelerating research in order to cure more children and ensure survivors have a better quality of life.

 

World’s Children Raise their Voices for Childhood Cancer in New Single

Every day 700 children are diagnosed with cancer. It’s time to raise our voices.

Some of the most famous singing kids on YouTube are forming a supergroup to raise awareness about childhood cancer. And the best part? The children of the world are invited to join in!

At child4child.com kids can sing and record the chorus of the song, which will then be released on Feb. 15th, 2016—International Childhood Cancer Day. The song “We Are One” has been created by Christophe Beck, the composer for Disney’s smash hit Frozen.

Childhood Cancer International (CCI) is an umbrella organization currently representing 180 parent-led childhood cancer organizations in 90 countries. Today CCI has launched child4Child.com, the first global initiative where their member organizations join forces to raise awareness of childhood cancer. Of the 250,000 children that are diagnosed with cancer each year, about 90,000 of them will lose their lives to the disease, making cancer the number one non-communicable disease-related cause of death of children worldwide. The organization has now teamed up with some of the most talented singing kids on YouTube, many of them famous for their appearances on talent shows such as America’s Got Talent, The Voice Kids Australia and Britain’s Got Talent. Their performances have together reached over 300 million views on YouTube.

The new song “We Are One” is written by internationally acclaimed composer Christophe Beck, most known for creating the score to Disney’s smash hit Frozen.

“I’ve composed the scores to over a hundred films, including Hollywood blockbusters such as The Hangover, Ant-Man, and The Peanuts Movie. But this has by far been one of my most challenging assignments. Luckily I had my daughter Sophie by my side, a talented and precocious musician and songwriter herself, along with lyricist David Goldsmith, who wrote some beautiful words to inspire us. The three of us have been working on the song together and I am extraordinarily pleased with the results,” says Christophe Beck.

Children are invited to sing and record the chorus of the song on the child4child.com website starting January 11th. One month later on February 15th, the International Childhood Cancer Day, the song will be released on music streaming platforms such as Spotify and iTunes. The chorus of the song will contain all voices recorded on the website.

“With the song ”We Are One” we wish to honor all children of the world, particularly those in their courageous battle against cancer,” says Carmen Auste, the current Chair of CCI and the mother of a childhood cancer survivor.

Child Ambassadors for the campaign are Alexa Curtis (winner of The Voice Kids Australia 2014, Livvy Stubenrauch (the voice of Anna in Disney’s Frozen), Robbie Firmin (Britain’s Got Talent) and Aaralyn O’Neil (America’s Got Talent).

 

Children from around the world can visit the website from January 11th until early February. Then on February 15th, International Childhood Cancer Day, the chorus version of all of the children who had recorded themselves singing will be launched on global music platforms.

A music video will also be released on YouTube with clips of the children who have helped record the chorus.
Join the chorus of children around the world in solidarity with those battling cancer.

We are one.

We are strong.

And we will sing this song together

So sing along

And as one

We will rise

We won’t give up the fight until the night

Yields to the sun

We are one.

Leila

One year ago our princess breathed her last breath …
I thought I should not remember this day, I thought it would not matter whether it’s a day, a month, a year! But in the last couple of weeks for some reasons memories have come back stronger, making the days hard to start, everything look pointless, meaningless …
A child has no guilt, just smiles and wishes to live, full of optimism. Why should they suffer? Life has a beginning and an end, this we know and should accept, but why so much sufferance ?!!!
Most of you have followed us throughout her illness, when in my mails I tried to show her best moments, to be positive. You may be surprised to read me this way.
She was amazing, a fighter, so small and so wise, smiling as soon as she would feel a bit better, filling her every second she could with playing, learning, and giving us/me incredible strength.
Now at times I wonder what point is there in living a life … I am lucky I have the smile of our second child, he does not ask himself questions …
I have been asking myself: what would have happened if Lukas and I had not gone to the doctor after only 3 days of small fever. Even the doctor was initially fooled. If we had just waited another couple of days ….
When, at the very beginning, I challenged doctors asking if it made sense to cure her, given the seriousness of the illness, I was told that legally I had no right of decisions. They assumed an 80% chance of survival, like most types of leukemia, and I had to agree …
We tried, and we tried hard, from the 11th January 2012 to the 23rd September 2014.
We know that children have higher chances of survival because they can stand higher doses of chemotherapy … I let you read this testimonial of a child cancer surviver (http://zoe4life.org/2015/09/09/mauranne/ ) to just have a hint of the later side effects.
There should not be higher doses, but better medicaments, taking into account the farmaco-kinetics of a child body. They should endure less pain during the treatment, and be closer to a normal life during the treatment and afterwards.
Medics should have the means to better know when to cure, and when to let go….
So, in memory of Leila, I ask for your help. Help in children cancer.
Make it known, make this a subject that is not taboo simply because it’s too hard or difficult, contribute however you feel like it: support research.
Or otherwise,  play with the ill children or their siblings, help hospital to give bigger rooms, help the families by cooking for them (for us it was vital and a great sign of affection!) … There are infinite ways.
I personally have one goal, which is to see what could be improved for the final days of life, but I have not found the strength yet.
Foscolo claimed that we survive death through memory. Thank you for remembering Leila.
Adriana, Leila’s mom.

Fynn

Fynn was 2 1/2 when he was diagnosed with cancer.
The next 434 days immersed us in a completely alien world. We hope this video gives you an idea of this world.
 Thanks to the dedication and skill of the many health professionals Fynn has recovered and leads a normal life.
They say there is always somebody worse off than you. We’ve met many, and we realise how lucky we are.
-Michael, Fynn’s dad

Giacomo’s story

written by his Dad, Ben

“It’s probably nothing. But can you get out of work and come down here, please?”

Lara’s voice was controlled but taut, with a jagged edge betraying a concern far deeper than that expressed. I could hear her instincts buzzing and her mind ticking over in triple-time. I knew in that moment she sensed the real possibility of something malevolent and terrifying the horizon, its form unseen but its approach unquestionable.

I trotted from the office to the car. I drove too fast in the rain to join Lara and Giacomo, then two, who had been referred by his paediatrician, Stéphane Guinand, for an ultrasound. Dr Guinand’s creased fingers, their decades of expertly walking their way over children’s bodies, had found something unusual. Feels like a swollen spleen, he said. Maybe an infection. Best get it looked at.

“Where are you? I’m worried.”

“There in five. Hang on.”

It was 5pm and almost dark already. We entered the radiology place and sat. Outside, a dismal December evening like any other. Inside, nothing was familiar.  Giacomo fiddled with some papers on a coffee table, scattered them over the floor. I told him off, finding momentary comfort in the ordinariness of parental reproach.

We were called in directly and ushered into a gloomy office where a monitor was the brightest light. The radiologist had been waiting. She examined Giacomo, who griped a little as she ran the cold, gel-covered probe over his abdomen. She said nothing.

We gawked pathetically at the screen, hoping to glean some sense from what we were seeing. The radiologist turned to us and told us to return to Dr Guinand. Frightened now, we began interrogating. What had she seen? Was it serious? What do you know? She opened the door and urged us to go.

We scurried back to Dr Guinand, shoving the pushchair across roads and up curbs, not daring to speak. We entered his office and the kindly old man pointed at two chairs in front of his large black desk buried under piles of papers and family photographs. He was smiling apologetically.

“It’s a tumour,” he said, finally. “I’m sorry.”

That night, we were shaken from the coddled slumber of our lives and rudely delivered into wide-eyed wakefulness. Life would thereafter be recounted in terms of before and after That Night.

What followed were endless bewildering, bustling days of science and numbers. Needles in, blood out, bandages wrapped, sheets changed. Blood, urine, drugs, tears. Biopsy, hypothesis, probability, science. It might be this, it could be that, can’t say. We won’t know until we know.

And then our foe was unmasked. Neuroblastoma, his name. Nu-ro-blast-oma. Greek for ‘grows in the nerves’. Stage four, metastatic, advanced, aggressive, probably-going-to-kill-you cancer. Fetch the chemo, no time to lose, let’s go let’s go…

 Over the next 18 months Giacomo lived under ceaseless assault at the hands of masked figures in white who said nice words but did nasty things. His vitality was gradually eroded by the lifesaving poisons coursing through his veins. He grew thin, hairless and lethargic, a pitiful husk of a toddler. His bodyweight tumbled and became our obsession. Every mealtime was a test of strength, his and ours.

Giacomo_Collage

 After eight rounds of standard protocol chemo, then four rounds of tougher chemo, the tumour was smaller, his bone marrow cleaner. The time had come to bash down the door and evict the squatter. He underwent a fourteen-hour operation, with two surgeons working as a tag team. They sliced open his belly from flank to flank, pulled the gash wide, and cut and scraped all traces of the growth. The tumour had sprung from a nerve on the adrenal gland atop his left kidney, coiling upwards and threading itself throughout his abdomen like roots of a weed, wrapping its greedy fronds around veins, organs and arteries. Like archaeologists, the surgeons had painstakingly picked away at the thing, speck by speck, preserving the good bits and discarding the bad.

 Afterwards, the exhausted surgeons joined us in the waiting room. Still in their theatre garb, they were pink-faced and shiny, but grinning. They had managed to remove nearly all of the tumour, and the remaining 3-5% was inviable, dead tissue. I wanted to high five them and throw my arms around their necks. But these were Swiss surgeons at the top of their game, so I settled for a composed handshake.

 Next up, high dose chemo and a stem call transplant in Bern. A month in isolation, with some of the worst diarrhoea and vomiting I have ever seen. At one point his backside was so sore he needed to sit in a bowl of warm water for hours. But we made it through that too.

By comparison, the six weeks of radiotherapy that came next were a breeze. He had knockout gas every weekday morning, which messed with his sleeping patterns, and made his moods funky. But really, it was a cakewalk.

Finally, immunotherapy in Paris. Five separate, two-week visits at two-week intervals. Two weeks on, two weeks off. Another grim trial, but very different from chemo. These drugs, Anti-GD2 and IL2 had bizarre and at times hilarious mood-altering effects, not unlike the high-octane mania of amphetamines. He would jabber crazily, and giggle at his own lunacy, compelling his audience to laugh with him. But these antibodies also induced terrifying, sky-high fevers. One night, he hit 41°C.

Today, almost five years have passed since diagnosis. Giacomo is in school, fighting fit, and living life. He has a new sister to grapple with. Kids sometimes ask where he got his scars, and he just shrugs, nonchalant. Every day I think of cancer less, although it is still every day. But the net effect of this experience has been an awakening. I always loved my son, but my feelings have been crystallised and supercharged by gratitude and the relief of averted agony.

Giacomo’s story typically draws incredulity and praise at the perceived achievement of something extraordinary. But we just did what parents do. Only Giacomo deserves admiration. He shines brightest in his own narrative.

Giacomo

Giacomo today

Robin and his Beads

kids cancer switzerland

Robin, age 5, is quite proud to show off his beads.

Soldiers, policemen and firemen risk their lives every day serving their country or community. Each day people stumble upon accidents and risk their lives to save others. We recognize these heroes for their acts of courage; medals, decorations and other rewards are bestowed upon them by an appreciative public official or superior officer.

How do you recognize and encourage a young child fighting a battle against a life-threatening disease? A battle that is no less dangerous and harrowing? A battle where the outcome is as uncertain as the dangers faced by more well-known heroes?

You present that child with a Bead of Courage. In the French part of Switzerland, these beads are called Kanjis, the program is run by the Vaud Cancer League and Zoé4life finances the beads themselves.

Children receive beads for every treatment procedure and milestone that they encounter. Robin can tell you what every single bead on his over 400 bead strand signifies, from blood draws, nights in the hospital to hair loss and transplant. His beads help him tell his story and honours and recognizes his courage .

Robin was diagnosed 10 months ago, and his chain of beads shows his path, each one telling a tale of courage, patience, strength,  endurance, good days, bad days… And hope.

We would like to thank Robin’s parents Sophie and Florian for sharing these photos with us.

3000km by bike to support kids with cancer

3000km for kids with cancer

They left Bern two weeks ago, and have been biking several hours every day, in the blinding sun and sweltering heat, on a heart shaped journey.
An average of 150km a day for their amazing challenge: a race through Europe in the shape of a heart, for a total of just over 3000km.

Just a few days ago they made it to Paris and were able to rest and regain their strength. Today, an early start again as they leave the city of lights, and at some point today they will have reached the halfway point on their adventure: they will have biked 1500km. But still another 1500km awaits them over the next several days.

Why would two young men, fresh out of college, chose such an epic challenge instead of spending their summer relaxing and enjoying their time off ? They have decided they want to make a difference. They want to raise funds for research into childhood cancer, which claims the life of one child every week in Switzerland.

Their motivation, as their legs get bruised and tired, as their arms strain and their backs ache, are the kids fighting for survival in the hospitals in Lausanne and  Geneva.

They want to show their solidarity for those kids and their families, and in doing so, they are showing the world that together, we can all make a difference.

To follow the adventures of Jeremy and Kenneth “live” go to their facebook page or read their daily reports on their website.

Paddling for cancer !

Yesterday the Zoé4life team participated in the first Dragon Boat training day!

Our amazing team broke all records with its lightning speed… Well it was almost like that.

Here is a very short film showing you how well we did.  Of course, this movie has in no way been altered… 😉

An amazing training day under the shining sun.

A special thought goes out today for all the children presently in treatment and those who have recently left us. It is for you that we paddle.

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