The other day, someone asked me why my Facebook page has been loaded with posts related to childhood cancer. Which, essentially, means I was asked, “Why do you care about this so much?”
The obvious answer is that September is Childhood Cancer Awareness month. But my reasons go far, far beyond that.
Several years ago, I learned that a high school friend of mine had a daughter, Isabella, who had been suffering from a horrible childhood cancer called neuroblastoma. Before that, I’d never heard of it. All I knew that if it ended in “blastoma,” it couldn’t be good. So I ended up on a Caring Bridge site authored by Isabella’s mom, Erin Santos. And I began following Isabella’s difficult, painful journey of neuroblastoma treatment through the loving, distraught eyes of her mother. Erin’s words were so poignant, so incredibly descriptive, and so heartfelt, that Isabella and her story became part of my soul. Does that sound extreme? I’m sure it does. But I’m certain that anyone who takes the time to read all of the painful details of Isabella’s long, five-year journey, and who then reads this absolutely heart-wrenching post about her death (http://www.caringbridge.org/visit/isabellasantos/journal/2) would find their soul seared as well. Isabella was such a special child. She did not deserve to be killed by this underfunded disease. But sadly, she lost her five-year battle on June 28, 2012.
As if Isabella’s story isn’t enough, I was “introduced” to another precious child through Taylor Swift. As you may know, she sang a song called, “Ronan” at the Stand Up 2 Cancer event earlier this month. Ronan Thompson was an absolutely beautiful little boy who died from neuroblastoma on May 9, 2011, three days before his 4th birthday. The song’s lyrics, derived from the blog (http://rockstarronan.com) of his heartbroken mother, Maya, provide yet another window into this dark, awful place that is childhood cancer.
As a person, let alone as a mom, how could I read about the stories of these two gorgeous children, and consume the gut-wrenching heartbreak conveyed in their mothers’ words, be haunted by the horrible aftermaths of their children’s deaths, and simply go about my life as if I’d never heard about them?
Like most people, I always knew “cancer” was an evil that needs to be destroyed. And when given the chance, I always have given to cancer-related organizations, thinking I was helping kids like Isabella and Ronan. But what I didn’t know, what I did not realize until Erin Santos and Maya Thompson came into my life, is that research into childhood cancers accounts for a mere 3% of The National Cancer Institute’s cancer-related research funding. That the money I was giving to The American Cancer Society, for example, was NOT going to the kids, but rather, to other more prevalent cancers.
What I also knew was that the face of childhood cancer was extremely distorted. Childhood cancer is not bald, smiling faces. Are there smiles at times? Of course there are. But what no one ever says, what no one ever talks about, is what childhood cancer REALLY looks like. It’s brutal and it’s ugly. It’s formerly healthy children being given toxic chemicals that makes them lose their hair, develop painful mouth sores, lose their appetites, and become emaciated. Its children being cut open to have fast-growing, malignant tumors taken out of them–from their abdomens, from their spines, and from their heads. It’s children being given antibody treatments that are so painful that their parents die inside as they watch their kids scream and writhe in unspeakable pain. It’s children having multiple bone marrow tests and suffering the painful aftermath of having an instrument twisted, turned, and pried into their hip bones.
Childhood cancer is loving parents watching helplessly, with blind faith in doctors, as their child endures that pain, with the hope that in the end, it will all be worth it. That a cure will be found.
And, in the case of Isabella, Ronan, and thousands of other innocent children, it’s a slow, painful death in which their bodies are, literally, eaten alive by the bastard that is cancer.
So why am I writing about this? I’m not an oncologist. I’m not even a medical doctor. I have a doctorate in communication. But isn’t that a big part of the problem here? A lack of communication? When people make a lot of noise, things happen. Things change. Silence, on the other hand, is consent. If we say nothing, and continue to ignore childhood cancer, assuming it will never affect us, then we are a huge part of the problem. If we keep blindly giving to broad cancer-related charities thinking we’re helping kids when really, we’re not, then we are a huge part of the problem. If we sit back and allow drug companies, The American Cancer Society, and The National Cancer Institute to say that childhood cancer isn’t prevalent enough to provide it adequate funding, then we are a big part of the problem. It’s time to make some noise.
Consider Erin Santos’ words written just days after Isabella’s death: “If everyone had to witness what Stuart [Isabella’s father] and I witnessed, there would be a cure for cancer…Because however you picture a child’s life ending can’t compare to what it is really like. I’m haunted by the images of her in my mind. I can’t walk in my bedroom, in my bathroom, I can’t close my eyes without seeing her eyes. I know in time the good memories will replace these but I don’t know when that will start. How can we live in a society that allows this to happen? People are living lives and not looking behind this curtain because if they saw what I saw, they would do everything they could to prevent it from happening.”
So what’s my purpose in writing about this? How can I, as a communications person, have an effect? I can do my best to help Erin and Maya pull back that curtain. Because as a human being and as a mom, it absolutely infuriates me that a simple lack of funding for childhood cancers allows beautiful, precious children like Isabella and Ronan to die.
But I don’t want to be angry alone. If you’re reading this, you should be angry too. For you, too, have been duped by the notion that childhood cancer isn’t really a big problem. Tell that to Erin and Stuart Santos. Tell that to Maya and Woody Thompson. Tell that to the countless other parents who had to watch their children die because research simply had no cures for their children. Go ahead, tell them. I dare you. Or better yet, let’s try to make a difference instead. Let’s use Facebook and Twitter and even good ol’ interpersonal communication to spread the word about amazing foundations like The Isabella Santos Foundation (www.isabellasantosfoundation.com) and The Ronan Thompson Foundation (TheRonanThompsonFoundation.com) that are working EVERY SECOND of EVERY DAY to bring an end to neuroblastoma and other childhood cancers. Let’s raise awareness about making donations to organizations like these, which give money DIRECTLY TO neuroblastoma research.
Let’s make ourselves aware and fight for better funding for childhood cancer research, not just in loving memory of kids like Isabella and Ronan, but for kids just like them who are fighting a horrible battle with cancer right now.
Because somewhere right now, as you read this, a parent is hearing those dreaded words, “Your child has cancer.”
Somewhere right now, a child is having surgery to remove a cancerous tumor that has invaded her body.
Somewhere right now, a child is violently throwing up as a result of his toxic chemotherapy treatments.
Somewhere right now, a child is writhing and screaming in agonizing pain as 3f8 antibody treatment is being administered to her.
Somewhere right now, a child is having a CT or MIBG scan while his parents wait to hear the devastating news that despite the aggressive treatments their child has endured, the cancer has spread.
Somewhere right now, two parents are scouring the web, desperate to find one more clinical trial, anywhere, to help keep their child alive.
Somewhere right now, two other parents are hearing the most awful words of all: “There’s nothing more we can do.”
So right here, right now, I want to do my best to make sure people know that this is the world of childhood cancer. So that when they have a little extra money and want to give to a worthwhile cause, they think of Isabella Santos and Ronan Thompson and give to the causes that thrive in their memories.
So why is my Facebook page filled with Childhood Cancer posts? Because I want to do my part to open those curtains, one person at a time. Because no child deserves to die. Because no parent should ever have to witness it. Because fuck you, cancer.