Big Things Are Happening

Every now and then, people surprise you.  That phrase goes through my head a lot – Buffy the Vampire Slayer said it after she got “Class Protector” award at her prom.  People don’t always notice when we try to make waves – ignorance is a choice sometimes – but when they do, the feeling that comes with being acknowledged is too great for words.  There are no words to say except, “Thank you, God!”  And I have been saying and thinking those words ever since I first got on the computer today.

The number one thing I am grateful for today is the news American Girl doll company has splashed across Facebook and elsewhere.  It is soooooo exciting!  Apparently, for more than a year, American Girl has been hard at work developing a doll without hair option for girls affected by cancer, alopecia, or any medical condition causing hair loss.  Debuting today as part of the My American Girl® line, the new dolls provide even more possibilities for a girl to create a friend that’s as unique as she is.  This just about moves me to tears because I grew up with these dolls, still have them in storage, and trust me when I say that if I was a little older when I had cancer (at the time I was diagnosed, I was just about 16 months old, so it wasn’t a big issue with me, since all I played with were basically baby dolls and baby dolls don’t have hair…), I would have dearly loved this option.  The people who work for the American Girl doll company just soared to the top of my list of heroes today.

Where I was very pleasantly surprised by this, I shouldn’t be, since this company has had a doll hospital from day one (I sent my own beloved Samantha there twice, once because her eyelashes were falling out and once to get a new head because her hair was so ratty), and they make doll hearing aids now – I would have definitely gotten this feature! – and I’ve seen doll wheelchairs, crutches, leg casts, etc in their catalogs before.  I guess the news just shocked me because I wasn’t expecting it.  I actually screamed with joy when I saw this on my Facebook newsfeed.  I’m very excited for little girls everywhere to have a doll that looks just like them.

There is another thing I wanted to share with you and that is the Creating Hope Act, which will make pharmaceutical companies develop new drugs for the children, not just for adults.  The U.S. Senate approved the measure last week, and it will go in front of President Obama in a couple weeks to be signed into law.  Now we are getting somewhere!  Since 1980 (I was born in 1981), the FDA has approved just ONE new drug for treatment of childhood cancer.  ONE.  That is pretty unfreakingbelievable, if you ask me.  Finally, finally, the children are getting a voice.  Finally, they are getting heard, and finally they are being offered hope for a better tomorrow.

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?

An Article about ACS and my own thoughts about it

I am sure many of you remember the blog post by one Andrew Becker in January on the American Cancer Society website.  It got the cancer families on Facebook and beyond in an uproar because it questioned if there was really a need for a bald barbie.  My blood still boils when I think of it, even now, because it proves one thing – children stricken with cancer do not have voices.  Children cannot vote, and therefore have no say in the way society works.  Imagine for a minute, if you will, a society ruled by children.  School would just be recess, or not even exist at all, and life would be utter pandemonium.

(This is not to say that adults are doing a stand-up job…  but I digress.)

But now look… we have got  True Hope Bratz Dolls, thanks to MGA who decided to step up while Mattel hemmed and hawed about it for the longest time.  I did not get that at all.  I still do not understand why something that could do so much good was not jumped upon the very second it was mentioned.  Really, people?  Is this the kind of world we’ve become?  If so, then I am deeply ashamed.  Just like I am ashamed of the American Cancer Society and their attitude toward childhood cancer.  It must be nice where they live.  Childhood cancer does not exist for them, or if it does, its threat is so small it’s considered unimportant.  After all, childhood cancer is “exceedingly rare,” isn’t it?

Not.

Here is the article.  I agree with every single word in it.  It was written by a mom who has watched her daughter battle rhabdomyosarcoma (cancer of the muscles) twice since the age of three.  46/7 – those are the numbers, as least for North America.  This happens EVERY. SINGLE. DAY.  And it is why cancer is the #1 disease killer of children.  And as this article states, there have only been TWO FDA-approved drugs for childhood cancer in the last two decades.  I don’t know if it is because people are lazy, blind, or just plain stupid.  If children do not come first, one day there won’t be any need for ACS because all they support, basically, are breast,  lung, and prostrate cancers.  And they call themselves American Cancer Society, the “official” sponsor of birthdays?  I don’t know about you, but when I think of birthdays, I think, first and foremost about children.  They actually get excited about their birthdays, whereas adults tend to lie about their ages.

CHILDREN ARE THE FUTURE.  SAVE THEM, AND SAVE THE FUTURE.  Why is that so hard to understand?

Are You Aware?

Today marks the beginning of International Neuroblastoma Awareness Week.  I think it needs to be every single week until this beast is vanquished for good.  Yesterday, a 6-year-old girl called Princess Lilly Valentine whom I followed on Facebook passed away from this disease.  She was just diagnosed in March or thereabouts.  That is how relentless this monster is.  It shows no mercy, and in defeating this dragon, we have to show it no mercy.

As a survivor, I feel it is my duty to continue the fight for Lilly, and for the others – Sierra, Rylie, Ronan, Saoirse, Tanner, Ila, RJ, and for those who are still fighting the beast – Emily, Brooke, Wes, Mia, Mallory, and Jacob.  There are more names, more children stricken with this stupid disease.  The list is longer than my arm.  I could rattle them off, but they’d be just names to you, unless you get on Facebook and look these children up.  Most of them have pages of their own because it is the easiest way to keep family, friends, and strangers alike updated on their journeys through cancer.  And as a survivor of neuroblastoma, I am determined to see the day when cancer is just a zodiac sign.  Go big or go home.  Those are my choices.  And I choose to go big.

This is only the second annual International Neuroblastoma Awareness Week.  It was originally started by Families Against Neuroblastoma (FAN) in the United Kingdom, but now it is a global event.  Did you know that it is the number one solid tumor cancer killer of kids?  Most children cannot even say “neuroblastoma.”  It’s grossly unjust.

The colors of neuroblastoma are purple and gold…  gold for the cancer (because, as I’ve said time and time again, children are more precious than gold…  All I need to do is look at my 3-year-old niece to confirm that), and purple for the children who have passed away from it.  I am wearing purple today and ALL of my cancer awareness bracelets (I wear them ALL every single chance I get).  I have enough to wear purple and/or gold all week long.

If you have healthy kids, do you know how blessed you are?  Hug them tight.  Yes, they will get on your nerves sometimes – that is part of what kids do.  There are parents out there saying goodbye as you read this.  There are children leaving this world.  It’s not right.  You can say that they are going to Jesus all you want, but the truth is, parents should not outlive their children.  Period.  Especially when these children are just babies.

Today is the Someday I’ve Been Waiting For

I’d like to give a shout out to Maya Thompson, mama of Rockstar Ronan.  Yesterday, she ran in the San Diego Rock and Roll Marathon without training, and she finished in amazing time – 4 hours and 51 minutes!  Amazing what people can do when they put their minds to it, huh?  She has said, “If kids can fight cancer, then I can run a marathon without training for it.”  Kudos to you, Maya…  I am so proud of you, and I know Ronan is too.   I know you don’t like to hear it, but you ARE an inspiration.  Look at it this way…  Ronan is making you an inspiration.  You and Ronan are gonna take this world by storm.  I’m inspired to create my own statement – “If kids can fight cancer – If I could fight cancer and survive – then I can use my writing gift to help spread awareness.”

This world may be filled to the brim with things that are awful, like childhood cancer and people who lie and say that they are sick but they’re really not, but it doesn’t mean that we should give up.  It means, instead, that we should strengthen our resolve and fight back harder.  It’s the only way we’re going to come out on top.

Someday is today.  It has to be, because tomorrow may never come.  No one knows this better than someone who has lost a loved one.  Cancer is horrible and it deserves to be vanquished.  That is why I enjoy seeing F U Cancer everywhere on Facebook.  Nothing has ever been more deserving of being effed, ever.

If kids have to fight cancer in this day and age, then I’m throwing everything I’ve got at it – my whole mind, body, and soul at it.  I will write and publish novel after novel about it, until people begin to understand the devastation cancer brings and begin to stand up with me.