Frustration

I heard from the state of Virginia’s Office of the Governor a couple days ago in response to my letter about childhood cancer.  I was excited at first, because of how it began:

Governor McDonnell asked me to respond on his behalf to your letter regarding childhood cancer.  Thank you for bringing this important issue to our attention.  I am happy to learn you survived pediatric cancer, albeit with some disabilities, and that you have become an advocate for children facing these cancers.  Each year, over 300 children in the Commonwealth are diagnosed with some form of cancer.  

I want to assure you that we do care about all our young citizens and their families facing a cancer diagnosis.  In September 2011, Governor McDonnell issued a proclamation for Childhood Cancer Awareness Month to help raise awareness in our state.  This proclamation can be viewed here.  In addition, Virginia does offer resources to assist pediatric cancer patients and their families.

It goes on for two pages, outlining what Virginia does for its sick children.  The state department of health has a “Care Connection Network” for children with “special” health care needs.  The letter also states that the majority of Virginian children do have health insurance (nowhere in my letter to Robert McDonnell did I even mention the word insurance, but…  good to know).  They have a statewide cancer registry:

Hospitals, clinics, laboratories, and physicians are required to report cancers to the registry, which analyzes data on cancers occurring in all age groups, including children.  This data allows public health officials to monitor occurrence and to identify areas to target for cancer prevention and control efforts.  

The secretary (the person who wrote the letter) acknowledges  that

Cancers children develop differ substantially from the adult pattern.  Thus, leukemias, brain and nervous system cancers, and lymphomas comprise 60% of childhood cancers, but comprise only 8.3% of adult cancers.  The difference between the two age groups indicates that public health prevention and control policies and activities should be tailored with recognition of this fact.  Surgery (30%), chemotherapy (40%), and radiation therapy (14%) are the most common forms of treatment of childhood cancers.  Hormone therapy (6.7%) is also employed.  The cancer registry does not collect information about unconventional cancer treatments, so that the extent of their use cannot be measured.

Of course the cancer registry does not collect information about unconventional cancer treatments.  Most of these “unconventional” ways have better success rates than the conventional ways, but shhhh….  They don’t want us to know that.

Last September,  hardly anybody outside of the childhood cancer community even knew it was National Childhood Cancer Awareness Month.  Pink ribbons overshadowed the gold.  Why?  OCTOBER is Breast Cancer Awareness Month, not September.  Perhaps this was to be expected during the first couple National Childhood Cancer Awareness Months, but this really irritated me.  And I am all for ANY cancer or health problem awareness, but…  I think of the little girls who will never grow breasts because childhood cancer killed them.  And that makes me mad.  And it is no surprise to me that the American Cancer Society has something to do with it.  Of course.  Of course.  Curesearch National Childhood Cancer Foundation helped establish September as National Childhood Cancer Awareness Month in 2009, while October was established as National Breast Cancer Awareness Month back in the 1980s.

So, just saying September is National Childhood Cancer Awareness Month is not enough.  I need to see it.  We all need to see it.  The children need to see it.  They need to know that we care, and that we are working to get them more research funding and better treatment protocols.  Because chemotherapy is basically poison, don’t you know?  There is no one chemotherapy made specifically with children in mind.  They all get adult drugs in smaller portions, and sometimes, as it was in my case, there are serious side effects.  When will enough be enough?  When will we finally get it right?

Focusing on the Positive

So, the American Cancer Society took down the blog post I wrote my last post in response to, and Andrew Becker wrote an “apology” of sorts.  The fact that this new post is called Bald Barbie Demand is an Over-Reach – UPDATED makes me think perhaps our Mr. Becker has learned nothing.  Most likely, ACS demanded he write an apology.  It wasn’t much of one, and he shows more concern over damaged relationships with advocates than he does about childhood cancer.  Indeed, he does say “But losing a child to cancer (or for any other reason) is unimaginable to me. The idea of having one of my children diagnosed with cancer is a pain I cannot comprehend. ”  That is right, mister.  You cannot comprehend it, not fully, until you lived it, or survived it.  That is one thing you’ve said since I found out you exist that I completely agree with.

Today, I came across an outrageous youtube video – I’m so mad that I cannot think of a stronger word than “outrageous” (and I don’t mean that in a good way).  The video itself was done in response the Bald Barbie Movement, and this woman was sitting in front of her computer and mocking the whole concept.  I couldn’t even watch the whole thing.  I had to turn it off after she condescendingly said, “Look, Mommy!  Barbie’s dying just like me.”  WHAT?  Whaaaat?  Is this chick for real?

I refuse to post it on my facebook page, and I refuse to post it here.  In fact, I flagged it for review and marked it “abuse of vulnerable individuals.”  I had so wanted to mark it as “child abuse” but as that ignorant lady was the only one in that video (other than her poor dog), I couldn’t justify that to myself.  I can only hope that this person never has kids or loved ones with cancer and that she never is diagnosed with cancer herself.  I’d never wish cancer on people, no matter how despicable they act.

*Deep breaths.  I need to stop worrying about what other people think and concentrate on what I need to do – focus on the positive.  Yesterday, I found out that tomorrow’s “Grey’s Anatomy” is going to feature a neuroblastoma case!  I am excited to see it.  What’s amazing about this is that they seemingly got there all by themselves – nobody talked them into it.  It’s one of my favorite shows, and having a childhood cancer story on there (think of the awareness it could bring!) makes my day!

Yes, I fight like a girl, but I’m not alone

After 1st surgery in 1983

Dear Mr. Andrew Becker of the American Cancer Society,

This is in response to your post Bald Barbie Demand is an Over-Reach. I know you have gotten many responses to it, and hundreds more on the American Cancer Society Facebook page.  People are stopping by, furious (justly so), telling you why childhood cancer is, in fact, not as rare as you and the rest of the American Cancer Society think it is.  I read it once before the “disclaimer” was put up, and it got my blood boiling.  It made me sick, quite literally, to my stomach.

I am a neuroblastoma survivor.  Do you even know what that is?  If you don’t, then click here.    The pictures in this post show you a slice of reality of childhood cancer.  I was diagnosed when I was 15 months old – almost 16 months.  My  mom had noticed that I was walking funny, and mentioned it to a nurse at my regular check up.  She said that I was leaning toward the left and refusing to let go of the walls and furniture – that when I did let go, I fell down a lot.  The nurse tried to assure her it was probably nothing, but it was.  My test results showed cancer.  Neuroblastoma, stage 4.  The tumor was attached to my right adrenal gland.  There were cancerous cells in my lymph nodes too.  Right away, I was scheduled for surgery, but came down with a cold, so it had to be postponed.  When I finally had it, they managed to removed about 50% of the tumor.  Then, wasting no time, my doctors started me on a very aggressive chemotherapy and radiation protocol.

A visit with my cousin Carol in the hospital

Mind you, they didn’t know very much about treating cancer in the 1980s (they don’t know very much about it now either, but I digress), and they knew even less about treating it in pediatric patients.  They gave me 19 months of chemo and radiated half my spine – they didn’t even know enough to radiate the whole thing.  As I grew, I developed scoliosis (by the way, that wasn’t very fun to contend with either).  They didn’t even know my last chemo treatment was indeed my last.  They didn’t know I had developed two really bad ear infections that escalated into a viral infection.  That viral infection damaged my brain stem and left me permanently disabled.  Eventually, it was discovered that I had hearing loss too, and because I had adapted quickly, teaching myself how to read lips, it was two years before they figured that out, and my speech was affected.  I regressed into a newborn state – couldn’t swallow, hold my head up, or even balance enough to sit on my own strength.  In fact, I had no strength.  I would have had nothing if I hadn’t been blessed with a wonderful family, and younger siblings who paved the way for me.  Back then, the doctors told my parents that whatever I didn’t get back within 6 months, I would never get back.  They didn’t know how it was, and they didn’t know ME.  It took longer than that, because my brother Ryan was born a month after this happened, and he had to learn to crawl before I could even think of doing it too.  When he learned to walk, I crawled over to the couch or whatever else was available and pushed and pulled myself into a standing position and took my first steps all over again.  By the time my other brother Patrick and my sister Jacqueline were born, I was well on my way.  I have come so far in the last 27 years since this happened to me, but I’m still living with the consequences.  And I always will.

Betcha didn’t think cancer could do this.  I am here to tell you that it can and does, more often than you think.  The childhood cancer drugs are the same drugs they give to adult cancer patients.  With your post, you have done more than just offend a community of parents, brothers, sisters, friends, etc.  You have, unintentionally, started a war.  I don’t think a bald Barbie is too much to ask.  It astounds me that you think it is.  We, the consumers, are not bullying Mattel or anyone else for that matter.  It’s simply an idea, one that we would dearly love to see become a reality.  The “disclaimer” that was added to the top of your post is not going to cut it, I’m very sorry to tell you.  You “may have sounded insensitive”?  No, you totally did.  There’s no doubt about it.  In fact, you sounded worse than insensitive.  You sounded like you don’t give a damn about childhood cancer, and that is really too bad, because you have three kids.  What would you do if one of them was diagnosed with cancer?  What would you do?  Would you apologize to the public?  You’d probably die of embarrassment or perhaps even self-loathing.  The questions you raised in your post were not legitimate questions.  They were stupid.  They were thoughtless.  And they were totally uncalled for.

Trying to smile after second surgery

Mattel is under NO pressure whatsoever to make a bald Barbie.  Would it be nice if they did?  Absolutely.  You asked what it would accomplish.  It would bring smiles to the faces of sick children everywhere, even to the faces of their siblings, cousins, friends, anyone who is not yet old enough to understand what cancer really is (and even to the children who have a parent battling cancer).  This bald Barbie would give these children comfort in a time of uncertainty.  Surely, you would want that for your own kids, Mr. Becker.  The children would be the ones to benefit the most from this toy.  Surely, a bald Barbie would cost less to make than a Barbie with a full head of hair.  Mattel saves money – oh, my!  They benefit as well!

The more I thought about your post and saw and read the reactions of the parents’ on Facebook whose kids’ cancer journeys I follow, the more I started thinking that maybe this was a reverse psychology kind of thing.  If it was, it worked.  Congratulations.  You’ve started a war.  But then, I thought, “This is the American Cancer Society, the organization that doesn’t really acknowledge childhood cancer at all, the society who gives LESS THAN 1% of donations to childhood cancer.”  I got mad again, and my anger led me to write this letter, which you’d probably never see.  But you know what, I am going to MAKE you see it, because I’m so sick of the children being the last in line when they should be the first.  They are the future, after all.  The future’s dying out, by the thousands, every day, throughout the world.  Hope is lost because people like you exist – people who stomp on us just as we were thinking we were finally getting somewhere.

Just FYI:  The color PINK has nothing to do with childhood cancer awareness – it is the color of the breast cancer ribbon – but little girls everywhere don’t know that and they still love pink.  GOLD is the color of childhood cancer, the color of sunshine, the color that parents see when their sick child smiles, the color of hope for these children.  And perhaps the most important reason that gold is the childhood cancer awareness color is because a child’s life is more precious than gold, not just for the parents and extended families but also for the world as a whole.  Children are the future, after all.

My dad got stuck with the yucky hospital food when the nurses brought me Fritos!

Childhood cancer is NOT “exceedingly rare.”  Are you serious?  Oh, you are?  Let me tell you something.  In the USA alone, 46 children are diagnosed every single day, and 7 more die from childhood cancer every single day.  And worldwide, those numbers jump up to 600 diagnosed a day, with 200 dying.  In the end, those numbers really add up.  600 kids x 365 days = 219,000 cancer kids  by the end of this year.  Things have got to change.  You can either help or get out of the freakin’ way for those o f us who DO want to help.  The only ones suffering backlash from this is you and your sorry excuse of a “non-profit” organization.  Doesn’t “non-profit” mean charity?  Your blog post on this bald Barbie is not in the least charitable or even sympathetic toward the plights of children suffering from cancer.  It did not win you any points whatsoever.  A big part of why we want this doll made is for children with cancer – that is true, but what about the patients with alopecia and trichotillomania?  Those are devastating too.  And I quote you:  “If [these dolls] are mass-marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers.  But could they end up being terrorized by the prospect of it..?”  Now, you are just reaching.  Like a friend of mine said, “if you don’t want to buy your child that Barbie, then don’t!  Plain and simple.”  Consumers have freedom of choice.

One more thing, before I let you go:  You ask the question, “Is raising awareness worthwhile?”  That is the epitome of stupid questions.  Of course it is worthwhile!  If no one knew about breast cancer, do you think their research would be where it is today?  And if no one knows about childhood cancer, do you think anyone will step up to help?  Children cannot fight for themselves, because they’re too young, too sick, and they don’t know how the world works.  But we, as adults, do know how things work, and we can be their champions.  Awareness leads to funding, and funding leads to cures.  It is as simple as that.  I may be one person.  I may be female.  But I’m gonna fight like hell for these kids whose little faces I see in my dreams at night and on my Facebook newsfeed when I log in every single day.  Yes, it is worthwhile to me, and to so many others.  Just you watch…  We’re gonna change the world.

Sincerely,

Danielle

Survivor of neuroblastoma and life