Zoe4life, for kids with cancer

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.

I’m not so different from other people…

childhood cancer

This month is International Childhood Cancer Survivors Month. 

As Childhood Cancer International states: by recognizing them, bringing them together, honouring their struggle, capturing their journeys and giving them spaces to be seen and heard, we show our survivors how much we value and care for them. 

Here is the story of one survivor: Samuel, age 15, who wanted to share his story and have people understand what cancer survival is really about.

I’m not so different from other people…

Yes I am slower and I have more trouble than others, this is true.

But I’m not so different from them really. I don’t come from another planet!

I’ll be 15 years old soon. I was 3.5 years old when I was diagnosed with a brain tumor. I don’t remember having cancer, or the treatment or hospitalizations, but the hospital has always been part of my life and I still have to go for checkups every two years.

At home I never felt that I was different, but once I started school I began to feel that I was not like the others.

In fact, my earliest memories linked to cancer are actually related to the school.

I remember my teacher getting angry because I couldn’t use scissors properly or zip my jacket.

Some classmates avoided me because they had been told that I was sick. They were afraid of me actually.

Others began to make fun of me and tease me until I would cry.

A bigger girl started defending and it reassured me to see that there were people who were there to help me.

But I learned that it doesn’t always work to react or to defend yourself. I accepted the fact that others teased me because if I reacted they would come charging in order to humiliate me.

This was very difficult for me because I was always left out. The teachers had neither the time nor the patience to explain the lessons to me slower or make sure I had understood. To them, the class had to move forward in the program and it was not their problem to find a solution to help me. It was my problem, and my parents.

From what my parents told me, the tumour I had was inside the cerebellum, which affected my balance. It’s better now. The treatments, surgery and radiotherapy, have had significant effects on my memory, especially short-term memory, as well as concentration.

I know it’s because of this that I am slower.

Everything changed when my parents found a way to enroll me in a private school. It’s not easy for my parents because it’s expensive, but since I’m there I feel less different and above all I feel supported by the teachers.

I’m in a class of about 12 students, with teachers who take the time to explain even several times if necessary and give us techniques to help us learn things and remember them, and they help me with this memory of mine which lets go sometimes.

Sometimes my mind plays tricks on me, and sometimes without knowing why, I suddenly just can’t concentrate any more.

But I’m proud because I am in the same program as the one given to public school. And I can do it!

I just need a little more time and a lot more effort than others.

The “others”, they were never cancer patients, they never had a brain tumour.

But I know one thing for sure:  I will receive the same diploma as them.

Although most of my classmates prefer having friends who don’t have problems like I do, I do have a few more friends now. The friends I do have are important to me, because they understand that I’m not so different and I feel safe talking to them about my problems.

I used to avoid talking about the fact that I had cancer, and I disliked people knowing that I had some problems. But now I do want to talk about it and share my experience with others.

I know that I have to work hard, and that when I need to I’ll have to adapt and find other techniques to learn, other ways to get there, but I know what I want to do when I grow up: I want to be a landscape architect!

I think that public schools should find a solution, a better way to help children who have problems, to help them work better, learn better.

My little sister is at the public school, and sometimes even she has problems, although not like me. It annoys me because I know that even if teachers want to help, they don’t always have the time. She has tons of friends and I tell myself that if my parents were to put her in my school she would lose all her friends.

Then there’s my brother, who has such an easy time with everything. But one day I was able to teach him a technique I learned in my school and it helped him a lot.

Sometimes I wish I was like him. Lean things quickly and easily without even trying, have better grades, have more friends, be less slow.

Sometimes he loses patience with me and he does things for me because it’s faster.

I am cured although I have a lot of problems because of the cancer and the treatments.

I am cured and I realize that it could have been much worse.

I am cured and maybe I’m a little slower than the others, but I’m not so different than them.

I am cured and even though I know it will be very hard for me, one day I will be a landscape architect.

I’ve been doing rock and wall climbing as a sport for several years and I love it. I take swimming lessons although soon I’ll be stopping that because I’ll be part of the PASTEC program, which is sports therapy for kids who have had cancer.

I’m looking forward to starting something new, to do sports with other kids like me who have had cancer or are still in treatment. They will understand me, and they will like me.

I know that I must work hard, I will have to adapt and find other techniques, ways to get there, but   I know someday, I will be a landscape architect!

Some facts about childhood cancer

Some facts

  • more than 250 kids will be diagnosed with cancer in Switzerland every year
  • treatments often last for years, with an average of 100 days per year at the hospital
  • parental leave is only three days
  • in most cases, health insurance does not cover all treatment related expenses
  • every week, in Switzerland, a child dies from cancer
  • more than half of children who are cured will have long-term side effects

What we do

Our mission is to:

  • support research
  • provide financial support to families in need
  • support kids during their treatments
  • raise awareness about childhood cancer and the problems related to treatment

Beads of Courage !

A new program for French speaking Switzerland, put in place by the Ligue vaudoise contre le cancer and funded by Zoé4life !

Soldiers, policemen and firemen risk their lives every day serving their country or community. Each day people stumble upon accidents or jump into frozen rivers to save survivors of plane crashes. 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.

Children receive beads for every treatment procedure and milestone that they encounter. A child can tell you what every single bead on their sometimes 1,000 bead strand signifies, from blood draws, nights in the hospital to hair loss and transplant. Their beads help them tell their story and honour and recognize their courage .

Beads of Courage help children coping with cancer record, tell, and own their stories of courage

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