But she did go, urged on by the memory of Megan’s last days, during which time Megan asked her parents and friends to keep her work raising awareness for childhood cancer research going.

I am forever in awe of the childhood cancer families who work so hard to raise money and awareness to fight the diseases that their children battle(ed). It is agonizing and exhausting for them at times I am sure. And yet they must, because, for some, the only thing worse than sharing their story is not sharing their story.

For those in the battle, research is the only hope. A solution could come soon, perhaps in time for their child. It was only a generation ago that childhood leukemia claimed something like 80 per cent of sufferers. Now the numbers are reversed and climbing, with more than 80 per cent of those battling childhood leukemia surviving. I’ve heard the number quoted higher than 90 per cent in some circles.

These families would almost all rather be doing something else. Most are unpaid, and all are so very tired from the additional burdens that fighting childhood cancer has put on them. They are absolute heroes in my eyes.

None of this takes away from the vital work being done by professional fundraisers, marketers and public relations folks at any medical, research institution or drug company doing what they can to fight childhood cancer or any other disease for that matter. Goodness knows, I am one of them from time to time, and I have been inspired and humbled by extraordinary professionals doing everything they can to advance the cause.

But in my books, the families are heroes of the highest order. There is no profit to be made by drug companies to research certain diseases, all too often, childhood cancers. That’s not a dig. They are businesses and their responsibility in the world as it is now is to make money for their shareholders, and not to solve the world’s ills. It costs billions of dollars to create new drugs, and the money they’ll get back from creating drugs to treat certain childhood drugs won’t cover the investment. So setting up and funding research facilities has actually fallen, in some cases, to families.

Families put their exhaustion, their personal pain, their incredible fear of what might come or grief at what has already transpired aside to work for a day when no one else might endure what they have faced or face now.

And if that isn’t the mark of a hero, I don’t know what is.

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The odds were against Megan McNeil even leaving the hospital when she was first diagnosed with adrenal cancer at the age of 16. Megan, however, wasn’t going to go without a fight, and fight she did, not just for herself but for the hundreds of scared kids she’d met in the childhood cancer wards and the thousands she’d never meet face to face.

But they knew her. Because she wrote the childhood cancer anthem that got them through dark, lonely nights in hospital measuring the time by the clicks and beeps of the machines attached to their small bodies.

Childhood cancer is not for the faint of heart. It destroys whole families. It robs them of everything they were and thought they would become. It puts lives on hold, crushes careers and finances, and robs them of each other.

Most marriages fail and the rate of siblings suicide is staggeringly high.

Amidst all that despair was Megan’s voice, pure and honest, and a song that gave families battling childhood cancer hope. Because when your kid is fighting for life, hope is in rare supply and high demand. It is what gets you through the next appointment, the next heartbreaking decision, the fear, and even the loss.

Megs was fearless. She made a bucket list and crossed everything off she could, including bungee jumping, ziplining and parachuting.

And she told her story over and over again to the tens of millions of people who got to know her through stories done on her by media outlets around the world.

Everyone loved her. Because she was generous, real, and just as concerned about other kids on the childhood cancer journey as she was about herself.

Her story was named one of the best of 2010 by Canada AM and the most inspirational story of the year by CBC’s Connect with Mark Kelley. But none of that ever went to her head. And she worked to get her message out, even when she hurt, was tired from the treatment or just plain wanted to pull the covers over her head and forget she had cancer.

She did it because she had a mission. And a belief that we would one day soon live in a world where children didn’t die from childhood cancer. A world where:

• soon, enough money would be pumped into the woefully underfunded field of childhood cancer research;
• drug companies would realize that while there are no profits to be made in curing childhood cancer, saving whole families from the despair of childhood cancer is profitable in other ways and;
• bureaucrats in Canada would have the courage to say childhood cancer deserves its own month in Canada the way it has in the States.

She believed and the world wanted to believe along with her.

And now that Megan McNeil has died, it will fall to other desperately ill children and their families to try and raise the money they need for life saving research. It will fall on other small, frail shoulders to push the government for Childhood Cancer Awareness Month in Canada (it exists in the US but not Canada) and to beg drug companies to invest in research that will likely not make them a profit.

10,000 Canadian childhood cancer families, inspired by Megan’s courage, have no choice but to pick up where she left off and fight for the lives of their kids.

Our hearts ache for her parents, Dave and Suzanne, who stood at her side because that’s what good parents do. What kind of strength does it take to support your daughter when her biggest goal is to grow up?It takes the strength of a Megan McNeil. And we know where she got it from.

As a gesture of remembrance, the family has asked that you please share The Will to Survive Video with friends and family you treasure. The link is:

http://www.youtube.com/watch?v=Y9pHISnIj2Y

And please download The Will to Survive from iTunes to help her in her fight to end childhood cancer and support two of her favourite causes, The James Fund and BCCCPA. The link is:

http://itunes.apple.com/ca/album/the-will-to-survive/id378380828

To learn more about Megan McNeil and The Will to Survive, please visit www.willtosurvive.org

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Discovered by top producer, Megan McNeil’s “The Will to Survive” captured hearts
across North America and gave hope to many

January 29, 2011 – Vancouver, BC – Megan McNeil, 20, a singer who captured the hearts of North Americans with her song about what it’s like to be a kid battling childhood cancer, has died. She had battled Adrenalcortical Carcinoma since she was 16.

Megan wrote The Will to Survive to lift the spirits of other kids in the chemo ward.  When legendary music producer Garth Richardson (Hedley, Rage Against the Machine) heard it, he knew he had to be the one to produce it, and a campaign to raise awareness to fight childhood cancer was born.

Canada AM selected Megan’s story one of the best of 2010 and CBC’s Connect with Mark Kelley selected it as the most inspirational story of the year. Tens of millions of people throughout Canada and the US learned more about childhood cancer thanks to Megan’s song and media campaign, and news features on her appeared as far away as England and Russia.

Megan is survived by her parents Suzanne and Dave McNeil. No details about a celebration of Megan’s life are currently available but will be made known when they are available.

The family is requesting privacy at this time but they have issued the following statement:

“Our daughter was our hero.  She taught us the meaning of bravery and inspired us every day with her own Will to Survive. She wrote her song as a gift to anyone who needed to be picked up on a very bad day. And when you are a family fighting childhood cancer, there are a lot of very bad days. We are so grateful for the many who have reached out to let us know how much her song meant to them. And we are so glad she was, and is, our daughter.”

Megan was clear in her final hours that she wanted her campaign to go on because, as she said, “Too many kids have died from childhood cancer and it’s got to stop.”

Megan considered it her personal mission to tell the world how terribly underfunded research is into childhood cancer. She also wanted everyone to know that research into adult cancers does not do much to help kids but research into childhood cancers helps everyone, including adults.

Proceeds from “The Will to Survive”  go to childhood cancer organizations, including The James Fund for Neuroblastoma Research, which funds the James Birrell Laboratories at The Hospital for Sick Children and its research into neuroblastoma, one of the deadliest childhood cancers; and BCCCPA. The Will to Survive is for sale on iTunes and also on Amazon.com

BCCCPA, founded in November of 2002, is a registered non-profit charitable society whose mission is to provide financial support to families of a child with cancer and raise awareness for children and youth with cancer and blood disorders. BCCCPA’s Family Financial Aid Program is a prime example of how some of this support and awareness is designed and delivered. Other BCCCPA activities include annual grants to childhood cancer research projects along with advocacy for initiatives and programs that help to enhance the quality of life for children and youth with cancer and blood disorders.

The James Fund was established by the family of James Birrell to generate funds and knowledge leading to new therapies for the treatment of patients with neuroblastoma, one of the most frequent cause of disease-related death in children. James died of the disease in 2001 at the age of 8.  James Fund researchers are recognized globally, and have taken the top neuroblastoma research award in the world. The James Fund and its benefactor, The James Birrell Research Laboratories at The Hospital for Sick Children, are considered by many as the best hope kids battling neuroblastoma have. To date, seventeen research projects have been funded, twenty-five papers published, a drug-testing unit has been established, eight international collaborations are underway, and a new clinical trial is  bringing new hope to the parents of children suffering from this terrible childhood cancer. Hollywood actor Tom Hanks is its Honourary Patron.

There is a Facebook Page called I want to give children fighting cancer The Will to Survive where fans can post their messages to the family. The website is www.willtosurvive.org and the video in support of the song is at http://www.youtube.com/user/GottheWilltoSurvive#p/a/u/0/Y9pHISnIj2Y The song can be purchased on iTunes at http://itunes.apple.com/ca/album/the-will-to-survive/id378380828 and on Amazon at http://www.amazon.com/The-Will-To-Survive/dp/B003T5FR1K/ref=sr_shvl_album_3?ie=UTF8&qid=1281311518&sr=301-3

-30-

NOTE TO EDITORS: B-ROLL, ART AVAILABLE. “THE WILL TO SURVIVE” YOUTUBE VIDEO IS CLEARED FOR BROADCAST.

For Further information, please call:

Susan McLennan (416) 699-1846 or cell: (416) 568-5974 or email: susan at babbleoncom dot com

Deborah Keegan (416) 691-5168 or cell: (416) 525-5177 or email: deborah at babbleoncom dot com

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Battling an aggressive cancer for the fourth time in four years, no one could blame now twenty-year old singer Megan McNeil if all she thought about was herself. But that’s not Megan’s style. Megan wrote the beautiful song The Will to Survive to help other kids on the chemo ward on bad days. And when you’re a kid fighting cancer, there are a lot of bad days.

Megan has campaigned tirelessly for the cause of childhood cancer, appearing in print, on tv and radio talk and news shows across the US and Canada. And even when press want to focus on her personal story of incredible resilience and hope, Megan is quick to turn the spotlight on other kids and the organizations she is using her song to support:

The James Fund, one of the leading funds in the world fighting neuroblastoma, a leading cause of death by disease in children (Honourary Patron: Tom Hanks);

BCCCPA, The BC Childhood Cancer Parents Association which provides financial support for the families of children battling cancer;

Solving Kids Cancer, who fund, find and manage solutions to improve the survivorship of kids battling cancer.

It’s not always easy for her to do. Some days she hurts. Some days, she doesn’t feel like telling her story to one person, let alone a million people who might be watching her on TV or listening to her on the radio. But she does it anyway because she has a message and she knows that no one can deliver it like she can.

Megan, kids fighting cancer around the world thank you for what you’ve done, and what you are about to do. We can’t wait to tell the world about all the big things coming your way in 2011.

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I got to know Katie when we were working on a national campaign around neuroblastoma and she became one of our ambassadors. She had a calm and a grace about her; she was, as another friend in the neuroblastoma world called her, an old soul.

Most neuroblastoma kids are old souls. Whether it’s the experience of having to fight so hard for your life that does it or something else, I’ll never know, but i do know that Katie radiated something that made me think she’d be the one to beat it. A cure would come in time or her body would suddenly stop trying to do her in.

I’ve been down that road of hope before with other families, each hoping their child would make it. One day, one of them will and others will follow. But not today. Not in time for Katie.

Katie, you brought hope with you wherever you went.You touched many in your brief time among us. And the world was better because you were here.

Rest well, sweet gal, free of pain at last. Rest well.

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James made it his mission to fight the neuroblastoma that would kill him, helping to raise money to fund research into the cancer he was battling. When it became clear to him he wasn’t going to win his fight, he resolved to keep going, saying: “I’m always going to be fighting cancer.”

And he is.

Today, The James Fund for Neuroblastoma is one of the world’s leading funds funding research into neuroblastoma, one of the deadliest forms of cancers that there is. Scientists around the world are noticing the work done at the James Birrell Lab at SickKids, hoping that one day soon, a cure will be found.

And even Hollywood has taken note. Tom Hanks is the James Fund’s Honourary Patron.

Babble On Communications is profoundly grateful to have been part of the journey, and we will always keep our beloved friend James near and dear in our hearts.

We applaud the Birrell family who continue fighting to save the lives of precious children although nothing they do can ever bring James back. And we commend SickKids for the heart and vision they bring to their work every day. It’s been an honour to walk beside them all on the road towards a day where no child dies of neuroblastoma. 

To watch the CTV documentary, go to:

http://watch.ctv.ca/news/w-five/w-five-james-legacy/#clip152172

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The James Fund’s work with neuroblastoma families has made them increasingly aware for the need these families have to come together as they ride the roller coaster of this terrible disease.

The James Fund hopes families battling neuroblastoma will join them for a weekend of fun, relaxation, information and connectivity for the whole family. The event will be held from September 25-September 27 at camp Ooch. 

Neuroblastoma families currently in the fight, those in remission, and those who have experienced loss are welcome. Your family might included siblings, grandparents, aunts and uncles, your nanny or anyone else you identify as a key person in your child’s care and your family’s well-being. Please feel free to pass this invitation along to other neuroblastoma families.

There will be much cancer related and neuroblastoma specific information presented by SickKids researchers and other key medical professionals.

The weekend will offer activities for the whole family, including a supervised children’s program staffed by trained, adult camp counselors.  The kids will stay busy while the adults learn, share experiences, and network wtih other parents and professionals. 

There will also be some wonderful entertainment, recreation and downtime to enjoy just being together.

And there is no cost to you!

The program is being organized by The James Fund and its volunteers. The Retreat was funded by The James Fund Golf Classic in Peterborough, an event organized by Greg Anderson, Pete Lawless and their committee. it was sponsored by Anden Kitchen and Bath. The event was hosted by the immensely talented and dedicated Michael Burgess.  

For further information, please visit The James Fund at www.jamesfund.ca 

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Some of us find beauty in sound, and some in the absence of sound. Life these days seems so full of noise that a quiet place can be hard to find.  Camp Ooch, where we are privileged to attend the James Fund Retreat weekend each year, is one place with both true quiet and incredibly beautiful noise.

Entertainment at the Saturday evening campfire was headlined by The Howling Bluebird African Drummers, an elite troupe that formed for only one performance. What a joyful noise as our children chanted, drummed and danced. And what a blessing that the weather held, and the drums stayed outside.

Fire trucks. With big, blasting, air horns. Better than potato shooting, I’m told.

On Saturday evening, after the adult reception, my father and I were strolling back to our cabin in the cool, damp air. Ahead and on our right, an owl called. Then, without a whisper of sound, he flew right across our path, like a shadow across the moon. Wow.

Perhaps the most beautiful sounds of all were the sounds of families. The mealtime hubbub; the roaring of giants, mumbling of wizards and screeching of elves during game time; and the focused murmur as we tie-dyed our T-shirts were all so special, yet so ordinary. These little moments, they are the stuff of life. They are the moments that we’ve learned to cherish. Everyone should learn this lesson for free.

The most beautiful quiet? Sitting scattered around a room with other parents and family members, and being asked, ‘What is the most important thing that The James Fund needs to do?’ After a few moments of thoughtful silence, every person had the same top two answers. Number two: Support the families. Number one: Find a cure.

Faye Whyte is the mother of two beautiful girls, Sydney and Georgia who, together with Dad Scott, support The James Fund by raising awareness and funds for neuroblastoma research through Sydney and Georgia’s HOPE Fund (Helping People Every Day). To learn more, please visit Faye’s blog. 

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