I met a “momcologist”.

The day before yesterday, I met Sylvia Vanni.

Sylvia is a “momcologist” who went to the end of the earth trying to find something, anything to cure her beautiful seven-year-old son, Sal, of Stage IV neuroblastoma.

“Right up to the moment he took his last breath, I never, ever thought he would die.”

Listening to those words while looking into her tear-filled eyes was one of the most difficult things I’ve ever had to do. I saw as clear as day what true, down-to-the-bone grief looks like.

No parent should ever have to feel it. But too many parents do. 

Which is why this year, staying up for 25 hours straight for our advertising program’s annual PhilADthropy event won’t be as difficult as it’s been in the past. Because my team will be working around-the-clock for The Mystic Force Foundation (www.mysticforcefoundation.com). Our goal? To turn the city of Miami (and far beyond Miami’s borders) gold next September in honor of childhood cancer awareness month.

At age 42, pulling an all-nighter isn’t as easy for me as it used to be. For the past three years, I had to sneak a nap just to make it through the night! But this year, I won’t be napping. How can I sleep when I’m actually being given the chance to try to do something positive for the thousands of children and their parents who are praying for a cure for cancer? How can I sleep when I’m being given the chance to truly raise awareness of this awful disease? How can I sleep when I’m leading a team whose goal it is to turn everything gold in September in the hopes of raising money to fund research for cures? 

I’m sitting at my desk staring in the the adorable face of Sal Vanni. Forever 7. 

Sleep during PhilADthropy?

Not a chance.

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When will it be enough?

Waylin Grace, age 2. Stage IV Neuroblastoma.

Nathen Trueblood, age 7. Stage IV Neuroblastoma.

Kirin Brogan, age 4. Stage IV Neuroblastoma.

Dominic Henriquez, age 19. DIPG.

Four boys who lost their fights to cancer in the past 3 days. Four families whose lives and hearts are forever broken.

When will it be enough?

When will people finally see that childhood cancer isn’t “rare”? That it’s real and it’s terrifying and it’s happening to so many children?

Visit the Facebook page of The Sierra Rayn Foundation (https://www.facebook.com/sierraraynfdn?fref=ts). It’s filled with the faces and stories of beautiful, innocent children who are fighting cancer. Their website features pages and pages and pages of children in various stages of their fight. 

Visit the childhood heroes pages on the Alex’s Lemonade Stand website (http://www.alexslemonade.org/newsroom/heroes). Again, you’ll see pages and pages of children with cancer. 

When will it be enough?

When will people REALLY take a stand and give to the organizations that are trying so desperately to fund research for childhood cancer cures?

Did you know that today is World Cancer Day? It’s a day to stand up and honor those who have lost their fights or who are fighting the beast. 

When will we stand up for those children? Today? Tomorrow? Next week?

Waylin, Nathen, Kirin and Dominic sadly have joined the ever-growing list of children killed by cancer. 

When will it be enough?

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Facing it head-on…

For the past four years, our advertising program has sponsored a wonderful event called PhilADthropy, an advertising marathon in which our students work around-the-clock for 25 hours serving South Florida non-profit organizations to create advertising and promotions for their causes. We’ve done a lot of amazing work, and I’ve always been extremely proud of what our students have given back to the community. We’ve seen looks of astonishment and tears of joy from our clients who are always amazed at what our kids accomplish in less than a day.

This year, we’re gearing up to do it again. But this time, for me, the stakes are higher than they’ve ever been. My client and her cause are seared into my heart.

I’m leading a team that will work with The Mystic Force Foundation. I will sit face-to-face with its founder, Sylvia Vanni, whose beautiful son Salvatore lost his battle with neuroblastoma on March 19, 2011 at the tender age of 7.

I’m excited to have the chance to work on a campaign for an organization whose sole purpose is raising awareness of childhood cancer and funding for cures for this insidious disease.

But I’m scared, too.

I’ve never actually stood in front of a parent who’s been through the agonizing and indescribable loss of a young child. Sure, I knew Stuart Santos in high school, but that was a long time ago, before either of us knew anything about childhood cancer. I never had the chance to meet Stuart’s daughter, Isabella, who, like Sal, also lost the battle with stage IV neuroblastoma. And yes, I’ve read every blog entry that Maya Thompson has written about her son Ronan, yet another stage IV neuroblastoma victim, and while his story and his amazing blue eyes are forever woven into my soul, I never met him or his incredible mother either.

But on Friday, February 8, I will meet Sylvia Vanni. I will meet and hug the woman who, in writing about the agony of her son’s death on her Caring Bridge page, had me in tears. Sobbing, actually. My heart hurts thinking about it. But it hurts with a purpose.

Together, our plan is to turn the city of Miami (as well as the rest of the United States) gold next September for childhood cancer awareness month. Our goal is to get past people’s passive consciousness of childhood cancer and get them to see–really see–what this bastard disease is all about. I’m confident that the campaign will be terrific and effective, because I have the most amazing and incredibly talented students in my program. It won’t be easy. Like me, the students on my team are about to come face-to-face with the heartbreak that is childhood cancer. And it will be my job to help turn their heartbreak into effective messages that will resonate with those who don’t know (or who don’t want to know) how serious and awful childhood cancer really is.

I’ve been actively doing my part to raise awareness of childhood cancer ever since Isabella Santos lost her fight. Because I never believed she would die. Because I truly believed she would live to see a cure. Because until her mother’s words broke my heart, I didn’t realize how vicious and unrelenting childhood cancer is. Because once I knew that, doing nothing was no longer an option.

So this Mystic Force Foundation campaign? This is real. This is me, working with my students, putting all of our effort and focus and talent into the process of truly opening the world’s eyes to this awful beast.

And we’ll do it in the name of a sweet, happy, loving little boy named Salvatore Antonio Vanni. A Captain America-loving warrior who fought and fought and fought until he couldn’t fight any longer. An adorable boy who was less than a month shy of his 8th birthday when cancer took him away from his parents, his brothers, his sister, and the rest of his family.

We’ll do this campaign for Sal. And for Isabella. And for Ronan. And for the thousands of other innocent children whose lives were stolen by this merciless disease.

Fuck you, cancer.

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Only 3,462 signatures to go!

The Light-the-White-House-Gold campaign is really picking up speed…since my post yesterday, we’ve surpassed 21,000 signatures and only need 3,462 more to go to reach 25,000. If you haven’t signed, PLEASE take a second to do so and share this link as much as you can.

Let’s show the kids who are fighting this insidious bastard that we care about finding them a cure.

Let’s honor the memories of all the beautiful children that cancer has viciously killed.

Let’s make a difference. http://wh.gov/PkGX

 

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Please sign this petition. Your voice is needed…

We’re now up to 17,795 signatures out of the 25,000 needed. Please, if you are reading this post, share this link with as many people as you can.

http://wh.gov/PkGX

And if my pleading isn’t enough, read Maya Thompson’s latest blog post. Look at her beautiful Ronan at the bottom. And try not signing after seeing it:

http://rockstarronan.com/2013/01/24/a-gold-white-house-i-will-not-stop-begging-or-crying/

 

 

 

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Almost halfway there…

Please join The Ronan Thompson Foundation, The Truth 365, the St. Baldrick’s Foundation, and others who are trying desperately to raise awarenss of childhood cancer by petitioning the government to light the White House in Gold next September for Childhood Cancer Awareness month. Won’t you please take a second to sign this petition and share it with everyone you know? We’re almost halfway there, but we still need 14,000+ signatures. Please help!

http://bit.ly/lightitgold

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LIght the White House in Gold Next September!

LIght the White House in Gold Next September!

Please sign this very important petition to raise awareness of childhood cancer. We still need over 18,000 signatures by February 6. Please help!

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The power of compassion and social media

Bella Rodriguez-Torres is an adorable 10-year-old girl in Miami. She is a “rhabdo warrior.” I wear her “Pray for Bella” bracelet all the time, along with my bracelets for Isabella Santos and Ronan Thompson. Bella has been fighting rhabdomyosarcoma for over five years and her parents have just learned that despite recent chemo treatment, she has relapsed yet again. They’re fighters and they’re not giving up. But this family really needed a boost and thanks to an 18-year-old superstar and lots of Bella’s Beliebers, that boost is coming…big time!

A few days ago, Bella’s mom started a campaign to have Justin Bieber meet Bella when he makes his tour stop in Miami. Let me first say that we’re a huge Justin house. My five-year-old daughter, Gabi, like Bella, wants to marry Justin. My eight-year-old loves him, too. We’re going to his concert on January 26 and I make no secret of the fact that I’m actually looking forward to it. Especially now.

Bella’s mom asked for help in getting Justin and his manager, Scooter Braun, to see her message and a beautiful video compelling Justin to meet Bella. Like thousands of others who have followed Bella’s story, I tweeted Justin and Scooter multiple times, asking them to please watch the video and make a little girl’s day…no, her life, by having Justin meet Bella when he’s here in Miami. I was skeptical…Justin Bieber has over 32 million followers. Even if 1,000 people tweeted him, the likelihood he’d see any of the messages, I thought, was futile.

Clearly, I was wrong.

This morning, Bella’s mom excitedly posted on Facebook that we had done what I thought was impossible–she received an email verifying that Justin would indeed meet Bella in Miami! Holy cow! Not only did this happen, but thanks to the immediacy and power of social media, it happened within a week!

And once again, the realization is clear: people have power.

Last night, I did my part in the Truth 365 campaign (www.thetruth365.org) and posted their amazing film on my Facebook page and Twitter feed at 7pm on January 7–to represent the 7 children who are diagnosed with cancer every day. This whole campaign is designed to harness the immense power of social media to create awareness of and funding for childhood cancer.

At 7:00pm last night, my Facebook page was filled with people who, upon my request, also had posted the link to the film. Again, I was witnessing the power of social media combined with the innate compassion of people who are aware. And those who watched the film for the first time were awed by it. Their eyes were finally opened to the reality of childhood cancer and what it really means for these children and their families.

The mission is working. Social media really does have power for enormous good.

I, for one, am a believer. Or, as Bella, Gabi, and the other 32+ million Justin fans would say, a Belieber.

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A new year, a new push for awareness and cures…

The new year brings so many things, both positive and negative. Sadly, a new year won’t change the fact that since New Year’s Day, about 35 families have learned that their child has cancer. Or that about 235 children have lost their battle with this insidious disease . But with the new year, there is new hope too. The Truth 365 campaign is off to an amazing start. If you haven’t visited their site and watched their amazing video about childhood cancer, please click this link right now and watch the video that appears on the right-hand side of the page. It will change your life and how you think about childhood cancer: (http://www.thetruth365.org).

I truly believe the people behind this amazing campaign will do great things this year in the fight to raise awareness of and funding for childhood cancer research.

I also learned about the amazing $100,000 donation that The Ronan Thompson Foundation and Solving Kids’ Cancer have given to Dr. Yael Mosse at CHOP (http://theronanthompsonfoundation.com/about/funding). And that Dr. Giselle Sholler, who is running for a pregnant Maya Thompson this year, will be the recipient of funding from the RTF this year as well. Maya often has said that when a cure for relapsed neuroblastoma is found, it will be either Dr. Mosse or Dr. Sholler who finds that cure. So the fact that she continues to push so hard for funding to drive the amazing research of these two amazing doctors is extremely promising. Please visit this page to donate to Maya’s efforts: (http://www.firstgiving.com/fundraiser/rockandro/rockstar-run).

Despite that promise, children will still die. I learned this past week of Vinny DiGerolamo. He’s in the final stage of his fight against rhabdomyosarcoma. It’s absolutely heartbreaking to read about his struggle to stay awake, alert, and positive: (http://www.caringbridge.org/visit/vinnydigerolamo). His family is in agony. And they aren’t alone.  My Facebook timeline is filled with stories of children fighting cancer, children whose fights I’ve chosen to follow in order to keep raising awareness of this awful killer.

It’s a new year. And I really think this year will be a great one for raising awareness of childhood cancer. I’ll keep doing my part. I hope you will keep doing yours. We all can make a difference.

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The first Christmas…

This morning, as I look at my menorah and Christmas tree, look at all the ads in the Miami Herald about Christmas sales, and anticipate some much-needed time off from work, I realize that as happy as I am to have reached another holiday season, this year, things are different.

I realize that you can’t let yourself dive into the world of childhood cancer and expect to see holidays in quite the same way anymore.

I can’t help but think about Isabella Santos, Ty Campbell, Joey Aquaro, Lane Goodwin, Ariel Gariano, Avalannah Routh, Emma Ford, and thousands of other children who died this year. About Ronan Thompson, Brendan Hadvab, Sal Vanni, Jack Bartosz, Ezra Matthews, and Jessie Rees, who died before them. And about Bella Rodriguez-Torres, a sweet girl from Miami who just celebrated her 10th birthday with yet another round of chemo and who still fights every day. Or Super Sammy, who fights as well.

Not a day goes by where I don’t think of these children and their families. Childhood cancer, sadly, doesn’t go away.

So I was doing holiday cards for some colleagues last night and I went into my “holiday card drawer.” Yes, I really do have such a thing. I pulled out a box of holiday cards with a beautiful picture of a gingerbread house. I vaguely remember buying these cards at Publix a year or two ago without really looking too closely at the cards.

Last night, I paid more attention. And I noticed for the first time that on the bottom right-hand side of the card was a little note: “This card was designed by children who are patients at M.D. Anderson Cancer Center.” I then looked at the back of the card. On the back is a painter’s palette for the M.D. Anderson Cancer Center Children’s Art Project, with the tagline, “Making life better for children with cancer.” There are the names and ages of eight children who designed the card. The sales of these cards “benefit the emotional, educational, and recreational needs of patients.”

I was happy and shocked at the same time. When I bought these cards, I was one of the many people who knew nothing of childhood cancer. And yet, for some reason, I bought these cards. Was it foreshadowing? Was the universe trying to tell me that I was destined to be a voice for  children fighting cancer?

All I know is that I was pretty proud to be giving out these cards this year. Using the holidays to continue to spread awareness is a good thing. People need to be reminded that as they’re celebrating Hanukkah and Christmas and Kwanzaa and the new year with their blessedly happy and healthy children, they need to be enormously thankful and mindful. Mindful of the fact that for so many families, this is the first (or even the second or the third or the fourth…it never gets any better no matter how much time passes) holiday season after having lost a precious child to cancer.

As you’re watching your kids giddily open their presents, it’s okay to be happy. But please, take a moment to think about and pray for the thousands of children who are stuck in a hospital getting chemo for Christmas. About the parents who will be told, “Your child has cancer.” About the parents who watched their child endure and survive agonizing treatments and just want clean scans.

And please, think about and pray for the families who desperately wish for only one impossible thing: To have their child back.

To those families who are “celebrating” (enduring) the holiday season without their children, please know you are in my thoughts and prayers. Your pain, your agony, and your anguish are not forgotten. Your children have touched my heart and my new year’s resolution is to continue to do my part to raise awareness and help raise funding for a cure. In memory of your beloved children, and in honor of those beautiful kids who are still fighting.

Fuck you, cancer.

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