Hey, Mr. President!! Let's see that White House light up Gold!

I have been MIA for a while.  Not on purpose, just been so busy with lots of activities, home life, and work.  Seems like I get to bed around midnight or 1 and am up again around 6 or 7 am and going non-stop lately.  I'm not complaining, it helps to keep me busy and my mind busy.  I have less a need to blog or journal when I don't have time to sit and think and stew over what's going on.  Well today, I hit a road block.  I have a million and one things to do, and all I can think about is how much I am hating cancer today.  Specifically, childhood cancer.
We have a lot going on.  My uncle passed away almost 2 weeks ago in a tragic construction accident, Zach had surgery and its not healing well. Lucy has a horrid cough and today at clinic, her port was NOT cooperating, and poor poor Jack.  He has a lot of stuff going on emotionally and is acting out.  We can't seem to get him to talk to us about it.  I think we need a private family vacation for a weekend in the Dells.  Oh yea.....we CAN'T!!  why?? Because cancer is an asshole.  And we can't go that far from St Jude, and the environment is not "cancer friendly".  Ok, now I'm complaining...maybe even whining a bit.
The only thing I have been seeing on Facebook for the past week is how many of our precious children have lost their battle to cancer. OR how many are in the fight for the life at the buzzer.  OR how many literally have a short amount of time left on this earth.  What a horrible thing to see everyday, and yet, I don't block the posts, I share the statuses, and I cry. No I am NOT a Debbie downer when I share these posts, I'm a realist.  Whether or not you want to see it, its happening.  Whether or not it is in your immediate circle, children are dying every day from a disease that is seriously lacking funds in the childhood arena.  Cancer is the number 1 killer of children, yet its rare??  For every dollar that goes to ACS for cancer research, a penny goes to the kids.  There has been ONE drug developed specifically for childhood cancer in the past 60 years, the children have to take adult chemos, yet the White House lit up Pink the first day of October.  No gold for September.
 I know a little girl, Alivia, who has 30-90 days left to live because of a horrible brain tumor that has no cure or even treatment, and lost another one of our friend's child, Julian, to the same disease because there is NOT enough money to fund a treatment cure, and yet I walked into Kroger and was saturated with Pink.  Please do not mistake that I think there is anything wrong with Pink.  They have done a successful job of branding breast cancer.  They have done a successful job of raising awareness and funding for cures that were unheard of even just 10 years ago.  They have saved lives of my friends and family.  No, I do not hate the Pink.  I do not hate what it represents.  I embrace it.  I am just pissed off that its so branded and marketed that companies use it to make money, period.  Do NOT mistake their marketing for good will (not most of them). They are selling you Pink for one reason.  You will buy it.  And they will make money off of it.  When presented with an opportunity to help Brand Gold, most companies have politely said "no thank you".  People don't want to see bald kids. It makes them sad, and sadness does not create a buying need subconsciously for people, thus they feel sales may be lacking for their product if they "Go Gold" for that reason.  I understand, they run a business, they need to make money.  But duh! Pink didn't use to make money either.  Breast cancer was something that was NOT said outloud. It was a dirty word and not to be discussed unless behind closed doors.  Women died in hospitals from it not at home.  The chance for a cure after a relapse was slim to none, now the percent is high.  Have you seen "Terms of Endearment?"  That is how the face of breast cancer used to be.  So kuddos to them for Branding their pink, and bringing conversations out to talk about it and get companies to help with their branding efforts. NOW people start doing the same for the kids.  These little girls don't even have time to grow up to have boobs.  Or the little boys don't have time to oogle over them. If you can't survive childhood cancer, you have no opportunity to even care about boobs. And I want our children to care about boobs!
Lane Goodwin has gotten all sorts of thumbs up from people around the world, including numerous public figures and celebrities.   They are telling him to fight the fight.  Now why don't you take that thumb, and put it to work.  Go put in your pin number at the ATM, and send some money to Curesearch.  Use that thumb to dial some numbers of connections you have to take childhood cancer to the next level of awareness.  I know Lane appreciates the support as does his family, but do you really read their story??? I mean REALLY read it?  Lane is dying.  Lane is dying from a horrible disease that is lacking in research funds.  Yes, I said it. I said it out loud!  Stop hushing about it and whispering.  Do you not think anybody knows this?? Think his parents don't think about it EVERY single second of every single day?  Say it! shout it! be mad about it! And then do something about it.  It cannot just be us cancer families promoting gold.  We need your help.  We need to stop whispering, pointing, grieving in private.  We need to start yelling and shouting in public.
Somebody PLEASE ask the White House to Light up with GOLD!!!!!!! And then we can all send them our "thumbs up" for helping us to brand our disease so maybe a company will latch on a little tighter and makes some money and go Gold permanently in September.  That is the kind of money we need, and that is the kind of exposure we need to raise it.
Thumbs up...Lane and Alivia.  Your life will not go unnoticed and you will not die in vain.  I promise that!  Even if I have to spend my life making it so.....

Mr Becker has apologized

The entry I posted yesterday will not lead you to the original post made by Mr. Becker, but instead it will lead you to an apology by him. And of course a lot of back tracking and whys in regards to his original post.  Well, a little to late...a little to little a little to late actually.
The comment he makes is that he was trying to get the point across that social media should not be the means for bullying companies into doing things. I ask why not?  Social media is ran by individuals. It is run by you and me.  It's content is controlled by what we decide to blog, post, comment, or link to.  So in essence why shouldn't companies be bullied by the consumers?  Is it better to say a lobbyist is fighting for their company's best interests?  Wouldn't that too be considered bullying?  heck our government lives on bullying.  They want a bill to pass, they package it with a bunch of other little bills that have nothing to do with the original intent to get people to vote for their interests. And we call that politics?  So why does Mr. Becker and the ACS want to talk about social media and link the word bullying to it.  These mothers did no such thing.  They started a campaign, a petition, if you will.  They didn't ask Mattel to mass market a bald Barbie, they asked for it to be an option for purchase for those who may want it and to give proceeds to a worthwhile cause such as childhood cancer research.  And even if they did "pressure" Mattel, big deal.  Mattel is a big girl and Barbie wears big girl panties...sometimes.  Let them deal with their own image, brand, and press.  The only vested interest I can think of that the ACS had in this involvement was that they would not be the ones receiving the funds from it.
And one more thing, social media is here to stay.  And more and more smart companies recognize this and are using it to their advantage to advertise to young consumers, even us older consumers ;)  So to say this would not work is ridiculous. Actually, what it has done is brought WAY more attention to the issue than it would have gotten prior to the ACS's blog post.  And for Mattel's official statement to be something like "we don't take ideas from people for our products" is also insane.  What?  do you not know how capitalism works?  That wasn't their official statement, but pretty close.  And you know Barbie already has its issues with being disproportional to real life.  That bald barbie would fall right over cuz her boobs are too big!  So, maybe they need to rethink their marketing.  Anyhow, I've gone off track, like always.
The apology is way worse than the blog post.  I hope he got his ass chewed off when he went into the office today.  And I sincerely hope this brought more awareness to childhood cancer.  It is not rare, sad to say.  We had three new families in central Illinois come to clinic two weeks ago.  So while Lucy didn't even want a bald barbie, or any barbie for that matter, I still found his apology to be distasteful.  If you have an opinion, and you want to shout it out and have a huge company behind you to give you the means to do so, then do it, just make sure its exactly what you want to say, and how you want to say it.  oh....and do your research a little bit better too. Then stand behind your position.  Right or wrong.  I have a lot of opinions that I know people don't agree with, but if I feel strongly about it and can't be swayed any other way, I say it, and I stick with it.    That is all the time I will give this...I promise.  Good afternoon.

Disappointed with the ACS

We have had a busy few weeks, and I do have a lot to journal on.  Matter of fact, made myself a nice cup of chai tea, got my net book out, sat in my favorite chair and was ready to blog away this evening after the kids went to bed.  Then I read an article and it outraged me.  So now I must share with the world the article so you are free to form your own opinion.  I will not, however, be doing a relay for life team this year nor will I support ACS anymore.  I already knew 3% went to childhood cancer funding, and I knew that a huge amount of their monies are spent in administrative costs, but I still believed in their idea and the people that host and run relays.  And they covered a broad spectrum of the beast.  So while I knew they weren't the best organization out there, I still had hope for them.  Well, I think what little I had is gone.
here is why:  Bald Barbie Demand is an over reach

Let me tell you why this enraged me. The person who wrote this blog post and representing ACS has missed the point.  Not to mention they wouldn't profit off this. And childhood cancer is about as rare as breast cancer...in that it is NOT rare at all. And they are not asking Mattel to mass produce. they are asking for a specific audience for the product. I know the mothers who are campaigning for this and this made me have a little less respect for the ACS.

After I sleep off my rage, I promise to blog on more happy things and all things Lucy ;)  g'night friends