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Impressions of LIGHT UP HOPE, LIGHT IT UP GOLD

A lot of activities are going on around the world. Here you see the countries and locations of committed buildings to date:

Argentina (2015)

BUENOS AIRES, ARGENTINA ILUMINADA – SEPTIEMBRE DE ORO

CCI member, Fundacion Natalie Flexer, mobilized its team of parents, families, volunteers, friends and allies to turn September 2015 into a Golden September for Buenos Aires. With their drive and enthusiasm, they made Light Up Gold, Light Up Hope4kidswithcancer a reality in 4 iconic locations in Argentina which they chose for their historical and cultural significance as well as popularity with the community at large. Through this, they increased awareness on childhood cancer and why the community needs to support children with cancer and their families. It also opened up a lot of conversations on childhood cancer.

Casa Histórica de Tucumán

This is the landmark monument for Argentinian Independence ​on July 9, 1816. It is now operated as a museum for cultural artifacts.


Australia (2015)

Go Gold Australia


Canada (2015)

NEAL Rourke, Canada, CCI Tribute Lighting Coordinator (volunteer)

Neal was thrust into the world of childhood cancer on February 22, 2011 when he was told his 17 year old son Brendan had Ewings Sarcoma which had metastasized to both lungs. During the months before Brendan’s passing, Neal became intensely aware of opportunities for improvement, at many points along the childhood cancer care trajectory. After Brendan’s passing on December 31, 2012 as a way of honouring Brendan and keeping his memory alive.

Neal stepped up from being a dadcologist (i.e. dad co oncologist – patient advocate) to being a passionate childhood cancer advocate. He transformed his grief into working with and escalating the voices of other childhood cancer parents who believed that greater awareness would lead to more positive action. In his words, “I hope that by what I am doing now, other parents and families will not have to go through the terrible ordeal that I and my family experienced”. He started to work with other groups and individuals, towards intensifying childhood cancer awareness and turning September Gold for childhood cancer.

Neal’s passion and dedication to childhood cancer awareness first bore fruit in 2013, with the Lighting Up Gold of the iconic Skylon Tower observatory of Niagara Falls. This was followed months later by his collaborating in the organizing of the first of 4 Coast to Coast Against Cancer Ride school fundraising events to support families with their living costs and provide psycho-social support as part of hospital care. In addition to working with the Advocacy for Canadian Childhood Oncology Research Network (Ac2orn),Neal is a member of the US Coalition Against Childhood Cancer (CAC2) and volunteers with Canadas Big Book of Care national childhood cancer awareness media campaign.

Neal strongly believes that “we must preach beyond the choir (i.e. beyond people/ organizations who already support childhood cancer) if we wish to elevate the status and awareness for childhood cancer”. He also feels that by doing what he is doing, he is honouring his sons memory and helping inspire other bereaved parents to move from personal grief to sharing their stories, making their voices heard and helping create change. This is what moves him to promote, support and intensify the call for Gold in September.

In 2014, Neal participated in the CCI International conference in Toronto, Canada where the CCI members and attendees committed to Go Gold, promote the Gold Ribbon for childhood cancer awareness and scale up global initiatives to Light Up Gold in September. In 2015, he volunteered to be CCI Tribute Lighting Coordinator for the CCI Light Up Hope, Light Up Gold campaign. He provided technical guidance and support to CCI members and other supporters of childhood cancer, who with his help, were able to successfully Light Up Gold strategic sites in their countries. He compiled the global map of Light Up Gold events in both CCI and non CCI initiated areas which he had invited or tracked. Since the CCI website was under construction at that time, this Light it Up Gold zee map was hosted by American Childhood Cancer Organization (a CCI member in USA). Neal’s support was instrumental in the successful lighting of dozens of landmarks in 2015. Currently, he has assisted nearly 40 buildings/landmarks in Canada in going gold for September,2016 .

Neal lives in rural Ontario near Owen Sound with his wife Rose, two dogs and 22 birds.


Ireland (2015)

​In 2013, a group of parents in Ireland, whose kids were undergoing treatment for cancer, came together, inspired by Tony Stoddards campaign in the USA, for days of Gold (and yellow) in memory of his son Cole (who passed away from neuroblastoma). Like Tony, they felt the strong need to honour kids with cancer and build up awareness ofchildhood cancer, its devastating effects on the child, the family and their need for support. At that time there was no movement in Ireland to raise awareness of childhood cancer, neither was there a dedicated and focused charity for children with cancer.
The first building to agree to Light It Up Gold in Ireland was the Convention Centre in Dublin. This modern building is an iconic part of the Dublin skyline and it helped to persuade others around the country to join and support the campaign. Buildings all around Ireland started to Light UP Gold in September. In a moving and powerful show of solidarity, the Lord Mayor of Dublin joined numerous community members in an amazing candle-lit Light It Up Gold walk.
An adult childhood cancer survivor who joined the walk said “For the first time, I was free to publicly share and recognize my journey as a childhood cancer survivor”.
The overwhelming response of the community propelled this core group of parents to formally organize a charity dedicated to children with cancer.
As Margaret Meade, renowned social anthropologist once said: “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”


Spain (2015)

campana-ilumina-y-lazo-dorado

Campana Ilumina y Lazo Dorado

In September 2015, for the very first time, local town halls, churches and iconic landmarks in SPAIN TURNED GOLD. This was made posssibe by the solidarity, determination and hard work of members of the Federación Española de Padres de Niños con Cáncer (The Spanish Federation of Parents of Children with Cancer), a founding CCI member organization, based in Madrid, Spain. They launched “Campana Ilumina y Lazo Dorado” with the call to action “Enciende La Esperanza, Enciendelo en Oro”. Sixteen municipalities carried the message. Source: Villanueva de la Serena se suma a la campaña ¡Enciende la Esperanza! ¡Enciende en Oro!.

Roque Nublo

roque-nubloRoque Nublo (Clouded Rock, Rock in the Clouds) is a volcanic rock on the island of Gran Canaria, Canary Islands, Spain. It is a famous landmark of the island, is considered as the natural symbol of Gran Canaria and is protected as a national natural monument. Roque Nublo is the second highest peak of the island, 80 m (262 ft) tall, and its top is 1,813 m (5,948 ft) above sea level.


Switzerland (2015)

Geneva

I Want You to Change the Story

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 1950’s 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 traveled 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.

Nothing.

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.
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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.​ 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
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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 treatment 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.


USA (2015)

Boston explodes with gold to begin this year`s childhood cancer awareness month with a bang

Beginning today there will be gold lightings across the world  in recognition of Childhood Cancer Awareness Month. In the Boston area you will see the Prudential Building, The TD Garden, The Zakim Bridge, and The Atlantic Wharf shining gold for kids fighting cancer and in memory of those who were taken by this monster.
What  made this day truly special is that The Boston Red Sox have also agreed to recognize September’s Childhood Cancer Awareness. During the Red Sox game versus the Yankees at Fenway Park there was  an amazing display of gold before and during the game to honor kids fighting cancer and to remember those children whose lives were cut short from the #1 killer by disease of kids .
During the third inning 38,000 fans stood, holding gold signs with the names of children who were affected by childhood cancer. The Red Sox and Yankees players  also held and displayed  these signs on the field. There was e a gold ribbon painted on the field behind home plate, and 150 children affected by cancer wore r gold shirts and stood together forming a gold ribbon on the field.

Niagara Falls lit up gold

niagara_falls_light-it-up-gold_001 niagara_falls_light-it-up-gold_002

In September 2015, the Niagara Falls Illumination Board honoured children with cancer around the world by lighting The Horseshoe, American and Bridal Veil Falls on three separate nights: September 1st, 15th and 30th.

The 2015 lighting took place as a result of the application work of Mr. Levoy, a tireless volunteer on behalf of Camp Good Days and Special Times Camp Good Days. Camp Good Days and Special Times, Inc., ​is ​a 501(c) not-for-profit organization​ set up by Gary Mervis, with the help and support of many friends and community members in Greater Rochester, New York City. He saw the need for such a place in 1979​ after his daughter, Elizabeth “Teddi” Mervis was diagnosed with a malignant brain tumor at the age of nine. ​

As they traveled across the country to major medical centers seeking the best possible treatment​, ​​he realized that what was causing Teddi the most pain, was the loneliness of being the only child in her school and neighborhood dealing with cancer.​ Over the years, Camp Good Days has become one of the largest organizations of its kind with many of the programs and services started there being used as models for other cancer treatment centers and organizations around the world. Since its inception, Camp Good Days has served more than 45,000 campers from 22 states and 29 foreign countries ​Today, Camp Good Days remains dedicated to improving the quality of life for children and families whose lives have been touched by cancer and other life threatening challenges​.​

​Camp Good Days is a celebration of life…​, a place where courage knows no boundaries. Through networking, Childhood Cancer International was subsequently listed along side Camp Good Days on the official Falls lighting calendar website (http://www.niagaraparks.com/niagara-falls-attractions/niagara-falls-illumination.html).

The Falls will Light Up Gold again this year on September 1st at 10 pm. Illumination of the Falls has been financed and operated by The Niagara Falls Illumination Board since 1925. Today’s contributing members are the City of Niagara Falls, New York, the City of Niagara Falls, Ontario, New York State Office of Parks, Recreation and Historic Preservation, Ontario Power Generation and The Niagara Parks Commission.


Zimbabwe (2015)

Zimbabwe and its human lights of gold​

Giving Hope and Help

On the 23rd of September, 2015, Kidzcan invited friends, organisations and key stakeholders, which included the Deputy Ministry of Health and Child Care for Zimbabwe, The Honourable Adriin Musiiwa. He joined ev​e​rybody in lighting up their golden torches​, while singing ​a song. The LIGHT ​IT ​UP GOLD, LIGHT UP HOPE event was held at the Kidzcan offices in 6 Natal Road Belgravia Harare, with more than 50 people participating. A 36 meters golden ribbon on the ground was created and every one stood along the ribbon (taking its shape), with their individual torch lights held up high​. The Deputy Minister was very impressed by the initiative and delivered a message​.
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This 4 minutes video captures how the process went on:

In addition, on the 30th of September, one of the most prominent hotels, Rainbow Towers Harare, also lit the golden lights to show their support and solidarity with Kidzcan and Children/Adolescents with cancer.

The founder of Kidzcan, Andrea Whatman, a childhood cancer survivor herself graced these​ groundbreaking ​events. Andrea is a​ ​resilient ​cancer ​survivor having survived cancer 3 times. First​, when she was still a child and had leukemia; then,​ ​at age 55 she ​survived retinoblastoma and had her left eye removed; ​three weeks ago, she had radical mastectomy due to recurrence of her cancer. ​Despite all these challenges Andrea is the living symbol of ​how childhood cancer can never defeat the human spirit Her work and her life is the light that glows as an inspiration and guide for us all.

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