The Truth 365 has launched a week-long selfie campaign aimed squarely at the National Cancer Institute, which allocates a mere 4% of its funding to pediatric cancer research. My Facebook feed is filled with children–those still fighting, those who are NED, or those who are related to children who have died from the disease–holding a sign that says “More than 4.”

It’s a powerful campaign, not just for its message, but because it’s grounded in the children. Children whose lives have been touched by the awful world of cancer.

It appears that the people who work at the National Cancer Institute are not too happy with the campaign, standing firmly in their belief that they are doing their part and the children and their families are wrong to insinuate otherwise.  They believe that the allocation of 4% is appropriate, if not inflated, according to a scientist who provides support for the Division of Cancer Epidemiology and Genetics of the National Cancer Institute, Childhood Cancer Research. According to this scientist (unofficially), childhood cancer research appears to get 5 times its fair share of federal funding for research. In fact, these were his words (taken from a post on The Truth 365’s Facebook feed):

“Given that less than 1% of all cancers affect people younger than 20 why is 4% not enough? In 2014, 855,220 men and 810,320 women were diagnosed with cancer, while 310,010 men and 275,710 DIED. So childhood cancers at 13,500 represent about 0.8% of the total but absorb 4% of funding. That looks like 5x overfunding if you assume proportionality is equitable. So there are non sequiturs in the unsupported assertions.”

Forget about the fact that this man just swept 13,500 children under the rug as if they don’t matter. Forget about the fact that these children won’t get the chance to grow up and even have the chance of being affected by the cancers that these 275,710 adults died from. Forget about the fact that unlike adults, when a 7-year-old, for example, dies, that’s a loss of, on average, 70 years of life lost. To a disease for which the only treatment is often chemotherapies that are over 30 years old and created for adults.

Even if you forget all that, how can you forget that at the heart of this campaign are CHILDREN? Children who are suffering from cancer and its treatment. Search the hashtag #Morethan4 on Facebook, Tiwtter, and Instagram. You’ll see that the kids holding these signs are almost always bald, emaciated, traumatized children pleading with the NCI to allocate more money to saving their lives. And this guy’s response is that childhood cancer is OVERFUNDED? How can he sleep at night, knowing how his words betray each and every one of those children and their families?

Here’s the bottom line: One of every three children diagnosed with cancer will die from the disease or from the antiquated adult-based treatments used to cure it. So to those who say the success rate of curing kids with cancer is high so more funding for research is not needed, you’re grossly misinformed. And if childhood cancer is so rare that it doesn’t warrant more funding, why is my Facebook feed filled with children fighting one of the many 12 types (and 200 subtypes) of this awful disease: Neuroblastoma, DIPG (which has a 0% survival rate), osteosarcoma, hepatoblastoma, medullablastoma, Ewing’s Sarcoma, ALL, AML, AT/RT, and so many more?

Sorry, National Cancer Institute: 4% is NOT enough. So don’t dare try to justify it.

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Beyond disturbing…

Yesterday, several people stumbled on a blog post I had written several months ago about a boy named Reilly, whose childhood cancer “illness” turned out to be a hoax. At the request of several people who alerted me to the falsity of his mother’s “story,” I deleted the blog post. That should be that, right?

But it’s not. Because I can’t get the enormity of the monstrosity of this out of my head.

This blog has but one intention: To raise awareness of childhood cancer in an attempt to make people see how prevalent it is and how many children and families are utterly devastated by it. The hope is that raising awareness will lead to increased funding toward safer, more effective treatments, and, ultimately, cures for all childhood cancers.

When I think about the kind of sick, insert-your-favorite-expletive-here person who could use childhood cancer as a hoax, to get people to give her money, it literally turns my stomach. That a person could steal photos of a healthy child and claim the boy in those photos to be her “dead” son, claiming agony at having to teach her other son how to live without his brother, is beyond my capacity to comprehend.

All I can do is apologize to the innocent people I inadvertently hurt by posting that story in good faith. I thank each of you for bringing the scam to my attention. Sadly, because of the sickness of one woman who thought making up a story about a child dying of cancer was an okay thing to do, I will make absolutely certain that the children I choose to highlight in here the future are truly among the suffering.

What an awful world we live in that I even have to consider this. It’s truly, truly sickening.

But I’m going to put it behind me and proudly wear my red shirt for Bella today. Because this is the last time I intend to allow something like this to take time and attention away from the true warriors of this awful disease.


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Rest in peace, sweet Bella…

This afternoon, as the rains poured down in Miami, the Facebook post I’ve been dreading for weeks came across my iPhone screen. Bella Rodriguez Torres, the beautiful girl with the big, contagious smile, lost her battle today with alveolar rhabdomyosarcoma.

She was just 10 years old.

In her short 10 years, Bella touched thousands of people all over the country…actually, all over the world. She fought her disease really hard, but in the end, the monster was just too powerful to defeat.

All over Facebook, other childhood cancer warriors are posting their sorrow over Bella’s passing. Because Bella was an inspiration, not just to people like me, but to other children and their parents who are fighting this awful beast. Bella’s positive outlook and her undying belief in G-d have given others hope and have helped them to find some shred of happiness in the otherwise miserable world that is childhood cancer.

The outpouring of support for Bella’s parents and sister, and the sorrow over Bella’s passing makes it clear that the childhood cancer community is, in essence, a family. And it’s clear that Bella was a strong piece of connective tissue tying that family together.

Tragically, that childhood cancer family  lost a beautiful soul today. Its members are heartbroken, but will forever forever remember Bella’s laugh and her smile and her joy and her fighting spirit.

You will be missed, sweet Bella. Rest in peace. You’ve certainly earned it.

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An absolutely disgusting disgrace…

One of the many children I follow on Facebook, Super Sammy–who’s bravely fighting neuroblastoma (https://www.facebook.com/SamuelJohnsonFoundation)–posted a disgusting letter written by Andrew Becker, Director of Media Relations at the American Cancer Society. In it, he essentially bashes the people trying to persuade Mattel to create a bald Barbie in honor of girls fighting cancer. Of course, the proceeds would go to childhood cancer research. However, Becker argues that “childhood cancer is exceedingly rare” and that people are wrong to “pressure” Mattel into creating a doll that would serve such a tiny group of people.

First of all, I’d love to know where Mr. Becker went to college. I feel sorry for that school, having to boast him as a graduate. Because, as chair of a department that teaches public relations, I feel confident saying that his letter is the absolute antithesis of what we teach our students about what public relations practitioners should do. So he fails at his profession right from the start. Screw you, Mr. Becker.

Second, Mr. Becker obviously chooses to hide his ignorant head in the sand. Because if he were aware–if he were to look at my Facebook timeline, for example–he would see that childhood cancer is NOT rare. It is real and it is killing children left and right.

Third, thankfully, Moxie already beat Mattel to the punch. They already have a line of bald dolls to benefit childhood cancer research. I saw them for myself at Toys R Us. Screw you, Mr. Becker.

Fourth, it should be noted that the American Cancer Society does almost NOTHING to contribute to childhood cancer research. Most of what they raise goes to overhead, including the salary of their CEO and travel expenses, among other things. Screw you, Mr. Becker.

I easily could go on and on about the blatant ignorance of Mr. Andrew Becker. But I won’t. Instead, I implore you to read the words of Maya Thompson, whose beautiful almost-four-year-old son, Ronan, was killed by neuroblastoma. She said it all better than I ever could. If her words don’t shame Mr. Andrew Becker, nothing will:


Oh, and on behalf of the thousands of children killed by this “exceedingly rare” disease and the other thousands of brave warriors still fighting this “exceedingly rare” disease, I say:

Screw you, Mr. Becker.

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Three more…

Nicholas Pedone, age 7. Stage 3 neuroblastoma.

Thomas Sullivan, age 6. Medulloblastoma.

Silas Edenfield, age 4. Hepatoblastoma.

Three beautiful children. All three lost their lives today at the hands of the beast that is childhood cancer.

Please pray for their devastated families.

And please tell me: How can anyone still think childhood cancer is “rare?”

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Live Like Bella…

Bella Rodriguez Torres is a 10-year-old girl in Miami, FL. She has been fighting Stage IV Alveolar Rhabdomyosarcoma since the age of four and a half. Recently, she was sent home on hospice care, as her treatment options have run out.

I’ve never met Bella personally, though I have seen her before…I remember her sitting among friends and family at the cafe in the American Girl store. She was all smiles, the center of attention. Bella’s smile is infectious. In fact, it’s the first thing I think of when I see her name: her big, beautiful smile.

Bella’s parents recently launched a live like Bella campaign (#LiveLikeBella) on Twitter and Facebook, urging people to live life to the fullest, as Bella has her entire life.

But amazingly, this campaign has emerged well beyond social media. Today, while driving to a shopping center near my house, I saw a car with the words “Live Like Bella” painted in red–Bella’s favorite color–on the back window. Someone posted a photo of an overpass on the Palmetto Expressway, in which the words, “Live Like Bella” were arranged with Red Solo Cups (http://instagram.com/p/ZdC287OiAK/). Houses all over my neighborhood are adorned with red ribbons, red bows, and red signs, showing support for this amazing little girl who continues to fight this awful disease that, due to lack of funding for research, has no cure.

In a city like Miami where people don’t really know their neighbors, people speak different languages, and the reputation of the public is considered rude, at best, to see people coming together to show support for Bella warms my heart. And every time I see a Live Like Bella sign or bumper sticker or a red ribbon tied to a tree, I’m further reminded that sometimes, all it takes to raise awareness is an adorable little girl with a big smile, a big heart, and a strong will to live life to the fullest.

Sadly, it’s highly unlikely that this awareness will bring a cure quickly enough to catch up with Bella’s disease. But with thousands of people praying for a miracle, her odds of receiving one have got to be better than most.

In the meantime, I’m off to tie a red ribbon to a tree in my yard, and when I receive the “Live Like Bella” car magnet I just ordered, I will put it proudly on my car. Not only will this help raise awareness about childhood cancer, but it will also pay tribute to one of the bravest, most beautiful souls living in Miami.

Please pray for Bella. And live like her, too.

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Please pray for Bella…

My Facebook page is filled with kids fighting childhood cancer. Maybe I’m just a glutton for punishment, but when I find out about children who are fighting this beast, I can’t help but want to follow their story, and pray for their cure.

One of the children I’ve been following is 10-year-old Bella Rodriguez-Torres. What makes Bella different for me is that she’s from Miami. In fact, she lives less than 5 minutes from me. Though I’ve never met her, I’ve seen her–in the American Girl store. Her smile is even more contagious in real life than it is in the many photos of her.

Here’s the description of what this girl has been through (taken from her Caring Bridge page):

“I was born on December 12, 2002, & was 4 1/2 when I became paralyzed from a tumor on my spine & diagnosed with Alveolar Rhabdomyosarcoma, Stage 4 on 7/17/07. I went thru 54 weeks of chemo and 16 weeks of radiation to all 7 tumor sites and was in remission. I am able to walk, run and jump again! In April 2009 they found a tumor in my brain and I had full brain radiation, more chemo and an antibody treatment and was again in remission. On 9/28/11 there was a tumor found in my right ovary which was removed and the area was radiated. On 1/12/12 they found 3 new tumors in In my abdomen And I had more chemo and an antibody treatment. One month after this treatment in August 2012, 4 more tumors were found in my pelvis so I had chemo again. Jan 2013 the tumors were found to have grown while on chemo so I went to Houston to have a 16 hour surgery to remove the tumors, my uterus, my ovaries and have my entire abdomen washed in hot chemo. I am still recovering from the side effects and issues of the surgery. Please pray for me as I undergo my treatment and receive God’s full healing.”

Bella’s family and the 32,230+ Facebook family of Bella’s Believers prayed fervently and had great hope when Bella had her 16-hour surgery and hot chemo wash in Houston a couple of months ago. It seems logical that taking out all the cancer and putting hot chemo through her abdomen would kill the fucking bastard disease once and for all, right?

Nope. Childhood cancer is ruthless. As hard as Bella and her family and her doctors have fought, the disease has fought back even harder. According to her mother’s latest update, Bella has tumors all throughout her abdomen, surrounding several organs. She’s on dialysis. She has fluid build-up in her lungs. She’s in critical care. Despite the aggressive surgery and treatment less than three months ago, the monster is back with a heartless, cruel vengeance.

And yet, through it all, Bella can be seen on her Facebook page smiling, helping the nurses connect her to countless tubes, and eating big red popsicles. This incredible child smiles through the worst-imaginable treatment. She has touched the hearts of so many people, including mine.

Bella needs your prayers. She has fought for over five years and if anyone deserves a miracle, it’s this happy, smiling little girl. So please, take a moment and pray for Bella…

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The Sheer Heartbreak…

This video was posted on The Truth 365’s Facebook page today. It is one of the most difficult things I’ve ever watched. It depicts the final stage of six-year-old Miette’s journey…to donate her corneas after dying from DIPG. Yes, you see this beautiful child dead. And you see the sheer agony of her loving family, who have to watch her body being taken away.

Until now, I had only read and heard about the agony of a child dying. Reading about it and hearing about it is hard enough. But seeing it? It’s absolutely, positively gut-wrenching.

And that’s why I am so amazed and glad that Miette’s brave parents put it out there on YouTube for the whole world to see. Because seeing it is literally like a stab to the heart. And I think, sadly, that it will take videos like this–a stab to the heart– to make people realize how truly awful and brutal childhood cancer really is.

I remember reading Erin Santos’ story about how they took Isabella away after she died. And Maya Thompson’s story about having to leave Ronan. And Silvia Vanni’s story about losing her beloved Sal. I think of the families of Ty Campbell. Lane Goodwin. Reilly Bowman. Emma Joy Ford. Alex Scott. Alivia Gibson. Audriana Bartol. Avalanna Routh. Dominic Henriquez. Waylin Grace. Seeing this, and knowing that these families and thousands and thousands of others have had to endure this horrific nightmare only makes me that much more determined to keep talking about childhood cancer until cures and less harsh treatments are found. No child should ever have to die from cancer. And no family should have to endure the nightmare you see in this video.

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Remembering Isabella…

Today, March 9, Isabella Santos would have celebrated her 8th birthday. It should be a day of princesses and frilly skirts and cool boots and American Girl and dancing and singing and all the things Ib loved.

Instead, her parents are holding a blood drive in their daughter’s honor.

Isabella died last summer, on June 28, at the tender age of 7. She was killed by a cruel bastard known as stage IV neuroblastoma. She fought like hell for five of her seven years. But the beast finally defeated her.

In her new blog, Summer of the Dragonfly (www.summerofthedragonfly.com), Isabella’s mom, Erin, begins to open up about what it’s like trying to move forward in her life without her beloved baby girl. For those of us with (knock wood) healthy children, it’s yet another reminder about how on any day, at any time, this beast can enter our lives. With no warning, no pre-existing conditions, no long-lasting symptoms. It just comes. Randomly. And it wreaks havoc and complete, total devastation in the process.

Erin has one wish for today (other than the obvious one, that sadly, none of us can make happen): Please, if you are able, give blood today in Isabella’s honor. And if you are able, please donate to Isabella’s foundation (www.isabellasantosfoundation.com) and help in the fight to end childhood cancer.

All of us can make a difference. That’s what Isabella believed until the day she died. And boy, what a difference that little girl made!

Happy birthday, Ib. You are deeply missed, and your spirit lives on in the thousands of people like me that you touched. Rest in peace, sweet girl…

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What does “success” look like?

Last weekend, eight students and I pulled an all-nighter for our advertising program’s annual PhilADthropy event. Our client was The Mystic Force Foundation, founded by Dr. Steven and Sylvia Vanni, who lost their beautiful son, Sal, to neuroblastoma on March 19, 2011 at age 7.

The goal was to create a campaign to turn Miami gold next September in honor of childhood cancer awareness month. Sylvia proved to be the perfect client. After all, if PhilADthropy is truly an all-nighter for the greater good, then how much more good can we do than to raise awareness of childhood cancer? How much more “perfect” a client could I have gotten, given my strong desire to do my part to help fund research into cures?

When Sylvia addressed my students in the client briefing, they were faced with childhood cancer for the first time. Like most people, they all knew childhood cancer existed, but none had any knowledge of what it truly means to lose a child to this awful beast. After they met with and spoke to Sylvia, they realized that their hearts and their souls would be forever changed if they worked on this campaign.

I gave them the chance to back out. I told them that if this was too difficult or sad for them to face, I could easily arrange to put them onto another team. I fully expected at least one of them to take me up on my offer.

Instead, with tears in their eyes and fire in their hearts, they said they were honored to work on this campaign. None of them wanted out. They wanted to turn Miami gold. For Sal and for every other child lost or fighting this currently incurable disease.

So we delved into the world of childhood cancer. I made our team’s copywriter and lead art director read the gut-wrenching journal entries of Sylvia Vanni, Erin Santos, and Maya Thompson…the ones each of them wrote when they described the death of their children. I watched as tears poured down my students’ cheeks, as they faced the sheer agony of these three women whose children were killed by cancer. I watched them take every word, every image used in this campaign seriously. I watched them define what gold truly means, and how it can change the way the world sees childhood cancer.

These students are forever altered. They will never again see childhood cancer as a bunch of bald, smiling faces. They will see Sal Vanni. Isabella Santos. Ronan Thompson. Just three of the too many children eaten alive by the bastard that is neuroblastoma. They have seen the pages and pages and pages of names of children lost or fighting childhood cancer. It’s etched into their minds and into their hearts. They now know two undeniable things about childhood cancer: It’s not rare and it needs a cure.

Is that success? At some level, yes. This experience showed me that when people–even so-called self-absorbed college students–are faced with the reality of childhood cancer, they can’t turn away. They can’t pretend it doesn’t exist.

They can’t forget the agony that lives permanently in the eyes of Sylvia Vanni.

And I’m certain that each of them, in their own way, will do their part. Instead of scrolling through my incessant Facebook posts about childhood cancer, I bet they’ll read and share them. Instead of passing by the opportunity to donate to organizations like St. Jude, St. Baldricks, or The Mystic Force Foundation, they instead will donate.

And next September, when they see gold ribbons and floating lanterns and all that is gold around the city of Miami, they will take pride in their part in making it happen.

And when cures are finally found, they will know that in some small way, they helped make that miracle possible.

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