It has been two and a half years since my youngest child was diagnosed with cancer.
Her official cancer journey began on September 13, 2008, on our nation’s first Childhood Cancer Awareness Day, with the words no parent ever wants to hear or could ever erase from their memory. She was only five months old. The days that followed were a blur of tears, surgeries, and decisions. There is so much I could say about my daughter’s cancer experience. But honestly, I don’t really want to go “there” here - this is not a blog about Aurora’s cancer journey.* I have something more universal in mind. Just bear with me for another paragraph or two, and I promise I’ll get to the point.
My daughter’s cancer diagnosis rocked my world to its core. Things that once seemed like worthwhile beneficiaries of my limited time now seem superfluous, even extravagant. Cancer is the eminent priority-setter, as the specter of death is a dark cloud and a bright light all at once. Of course, I threw myself into the work - I learned all I could about my daughter’s cancer, researching causes and cures and reaching out to other parents of kids with cancer. I looked for meaning in the happenstance and came up short - but I’ve made my peace with it, on most days, probably only because my daughter didn’t die. But she has persistent medical problems. Since her cancer was in her spine, she has a chronic spinal cord compression injury. And because of her partial paralysis, she has orthopedic issues, sensory issues, and maybe others that haven’t yet come to light. Again, I researched all I could into those things, too. And I reached out to parents of children with those issues. And I found that a lot of it was familiar. Not the diagnosis, or the protocols, or the symptoms . . . but most of everything else. But what really changed my perspective on things was my nephew’s autism diagnosis just over a year ago.
Autism was new and unfamiliar territory, but I knew all about the importance of informed choice. So I attempted to do for my sister what I was doing for myself, which was to learn everything possible about this new disease, from status quo “standard of care” therapies to those on the cutting edge of modern science. Theories regarding the causes of autism are ingrained in those cutting-edge therapies. So in researching the cures, I also learned all about causes. And that’s where I had my “Eureka!” moment. Turns out that there’s a whole school of thought on whether autism is caused by environmental factors and whether nutritional factors can actually cure it.
Well, that sounded oddly familiar.
I kept seeing things like “oxidative stress” and “chronic inflammation.” They were talking about autism, yet I’d seen this before in my cancer research. It’s there in the asthma research. Autoimmune diseases? Ditto. Déjà vu all over again. I was seeing different diseases credited with similar causes and underlying conditions. That’s when it dawned on me that childhood diseases that are not attributable to inherited conditions - and that’s most diseases - may have the same origins.
I learned about how polluted our environment is in the context of disease. (While Al Gore makes beautiful and persuasive arguments that awaken a longing to drive a Prius and install solar voltaic panel roofs, the big picture of our next generation’s looming health problems and diminished life expectancy brings an immediacy to the green movement that feels far more personal.) Toxins are rampant and unregulated. Not only are they unregulated, we are actually lulled into believing that they are regulated so we don’t even bother to educate ourselves. Autism and cancer, I learned, are not usually inherited diseases (people often confuse “genetic” with “inherited;") they are caused by something external. Maybe they are caused by the same thing, and toxicity and deficiency are at the heart of their existence. I found this theory echoed in the literature on a number of common childhood ailments.
This all happened at the same time that I, like many cancer parents, was caught up in cancer awareness and begging for research. I spoke to my congressman personally, I wrote letters, I signed petitions, I fund-raised, I pinned a gold ribbon to my lapel. Lots of groups are out there, pitching their cause as the most-deserving, most-pressing potential recipient of everyone’s tax-deductible donations. I was out there, doing that. But the donations are limited, and how do you convince someone that the child with cancer is more deserving of a cure than the child with spina bifida? Or the kid with autism? I just couldn’t argue anymore that childhood cancer was the only place worth one’s tax-deductible donation. Even though I wanted, and still want, that cure. I want it.
But rivalry does not serve us. I can speak for many of the cancer parents and say that we’ve expended considerable effort toward setting our case apart, extolling the singular necessity of our cause above and to the exclusion of all others. But the point we’ve perhaps missed is that, primarily, what’s most unique about our needs is the particular brand of pharmaceutical voodoo we’re after. The rest of it is pretty universal. (Okay, other than the fact that cancer often kills, and funding for research is lacking in part due to public misunderstanding of how much work is actually being done for kids specifically, but I’ll save that rant for another day.) We are connected by the common thread of having a sick child. Consider not only that some of the causes are similar but also that the issues related to having any disease at all are exactly the same no matter what the disease. And there are no groups uniting the parents on these issues. Believe me, I’ve looked. They don’t exist. There are multiple groups for every single disease you can name. There are groups dedicated to greener parenting, but they often seem more like a fashion statement than a movement. There are groups dedicated to saving the environment, but they’re focused on trees or whales or wind farms or dependence on foreign oil - when you‘re facing your child’s illness or impending death, those things are far too remote. Surfing the web’s sea of free association, I wondered: where was the group for the parents of sick kids, talking about the issues that affect us all regardless of the particular flavor of sickness? If, for example, the sick environment is making our kids sick, then why aren’t we pooling our formidable energy to curing it? I’m not suggesting that we shouldn’t fund cures for diseases. But I must say that to focus only on curing a disease is detrimentally one-dimensional. Kids shouldn’t be getting cancer in the first place. Or autism. Or asthma. Why are they getting it? And how do we change things so that they don’t? What could be more important?
An umbrella organization is an association of (often related, industry-specific) institutions, who work together formally to coordinate activities or pool resources. In business, political, or other environments, one group, the umbrella organization, provides resources and often an identity to the smaller organizations. That’s the Wikipedia definition of an umbrella group. Can you see where I’m going with this? We parents can come together on a number of issues that affect all our children. Take away the name of your child’s particular disease, and stand under the umbrella of parents of children with any disease at all, and suddenly we find that we need a pretty damn big umbrella.
Health care - it affects all parents and their sick kids. What about healthcare reform? It’s our preeminent issue. The environment? We can’t take it for granted anymore, now that those once-remote consequences have singled us out. Our food production methods - if we are what we eat, then that explains why we’re sick. In America, nutritional supplements are big business. But our food . . . It’s often junk, junk consisting of more non-food ingredients than any that we would recognize as being food if we were actually paying that much attention. Nutrition is a Flintstone’s vitamin until your kid is sick. And then it’s so, so much more than that. Special education? It’s not such an entitlement (read with distaste) after you realize the implications and burden for your entire family. When you realize that your child’s disability is the result of a random lottery in nature, when every single parent received a ticket, and you were the lucky winner by sheer chance - not lifestyle choices. In the face of nation-wide budget cuts, education suffers; how do you advocate for your child to the exclusion of the many? Alternative and complementary therapies - there’s a whole underground movement to bring these into the light of day but the medical establishment refuses to go there with us. A parent who refuses standard treatment for his child battling cancer faces challenges to his parental authority – even though, in almost all cases, the standard cancer treatments are only gauged in terms of whether they can buy that child five more years of life. Parents of autistic children are regularly ridiculed over something as simple as questioning whether their subsequent children really need to have that MMR vaccine, even though some researchers have shown convincing proof that the topic deserves a second look. Why? Why the dogma?
I am no one of consequence, just a mom of a sick kid and the aunt of another sick kid. I don’t have the answers, but I think I might be asking the right questions. I invite you to seek answers with me, or even add a few questions of your own. Continue to support the cause of your choice. Just consider that outside the specific diagnosis, outside the protocol for your child’s treatment, all parents of sick kids face similar challenges and there’s a distinct possibility that the diseases themselves are linked by causal factors. And then remember that there is strength, and political power, in numbers.
Today is March 4th, 2011. I love March 4th - the only day of the year that is also a command. I’m not much for New Year’s resolutions. Coming off a hectic holiday season, I often don’t enjoy the restrictions that resolutions impose. Plus it’s winter and winter is long and it’s depressing; resolutions fall by the wayside. But spring, or the promise of spring, always renews my hope and my resolve.
March Forth.
Consider that a group of concerned citizens - a group of loosely-bound but highly-motivated parents, together under that big umbrella -- can change the world. “Indeed, it’s the only thing that ever has.”
And with that in mind . . . march forth.
*For those that are interested in learning more about or following my daughter’s cancer journey, her carepage is located at www.carepages.com/carepages/AuroraLeigh.
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