The Mom of a Survivor....

Happy New Year!  It is 2014 and I had the joy of ringing in the new year with both my lovely sons.  This year I had a new depth of appreciation for this moment.  I was a mother kissing her survivor and looking forward to a new year ahead of us.  I was also grieving for another child who had passed away a couple of weeks before.  Not my own child, but the child who had been one step ahead of Sammy all through treatment...who and hair back before Sammy, who showed us how to cope with some of the nasties the treatment offered, and who celebrated being off treatment before Sammy and gave us hope that we would reach that milestone too.  He relapsed twice and finally found peace a week before Christmas.


Cancer SUCKS!!!!  It steals babies from their parents' arms after putting them through the hell of chemo and radiation, transplant and therapy.  Years are spent fighting this monster, and then it wins...sometimes...often...way too often.  Yes, I am emotional because the little boy, the nine year old, the one who always had a smile and a funny joke, is now in heaven and not with his mom.  I am emotional because every day I hear about someone being newly diagnosed, passing away, or suffering pain, the likes of which none should experience.  I am in the 'circle', as it were.  I am 'a member of the club'.  I know about these things all the time.

I have known about these things for years...ever since my son became one of the 36 diagnosed on September 13, 2009.  There were 36 more the next day, and 36 more the following day.  Each of those day we also lost 7 children to the monster.  I knew all of this.  I fought for my son and fought for some kind of sanity within the family.  We moved on a little...enough to pretend we are a normal family again.

But now I search for support to raise awareness of the evil that is childhood cancer and the need for funding and government support in research and development.  There is a petition right now asking the government to light up the White House gold this September.  The purpose is to create as much awareness for our children as has been raised for breast cancer.  I am not taking anything away from the need to highlight breast cancer as a worthy fight...it certainly is, but the fact the government turned down last years petition (it had over twice the vote supporting it than were needed) because they...well they didn't actually give a reason....

At the moment only 4% of government funding goes to ALL childhood cancers.  Yet cancer is the number one (disease) killer of children in this country.  The treatments most children receive are designed for adults...the chemo and radiation burn and cripple the children.  Yes, they remain alive...sometimes, but they face the rest of their lives looking out for 'Late Effects' which generally consist of organ failure, heart attacks, decreased IQ's, and secondary cancers.  Only 4% of childhood cancer survivors will escape these late effects!

So lighting the White House gold will increase awareness, increase government support and maybe increase funding to help meet the ever increasing demand for CHILDHOOD treatment to childhood cancers.  If you feel you can vote, please click on the link to do so.  It is free and only takes a minute:

https://petitions.whitehouse.gov/petition/display-gold-ribbon-and-or-light-white-house-gold-september-childhood-cancer-awareness-month/qDwkVwSG

Now this is where I am overly emotional right now.  I have asked people through Facebook, Twitter and forums of clubs I belong to to sign.  I have had many 'likes' but hardly anyone sign the petition, including my own family and close friends.  Why?  They know what Sammy went through....oh yes, he is fine now...and that is what bothers me the most.  I know what is happening in the childhood cancer world....but, unless I get graphic and basically scare the shit out of everyone, they don't get it.  They see success.  I cannot ever imagine it being any other way...please understand that...but so much is needed to be done to help save children's lives, and my own loved ones don't get it.  I am in the very lucky position of being able to fight for others with the happy knowledge that my son is doing okay right now.  I have no idea what his future holds, but I can appreciate NOW.  What I can't do is move on completely...I know too much.

Please fight for the children and sign the petition.

The Health Bill

In 2014 Sammy will be 10.  He won't be thinking about health insurance, and hopefully, we won't be worrying about his future health!  I am not going to get political, but one good thing that has come from the last four years has been the fact that my son, who through no fault of his own got cancer,  will now be able to get insurance despite having such a pesky ol' pre-existing condition.

Had this bill not been passed, Sammy, like millions of other children with pre-existing conditions, including his brother who has asthma, would have paid through the nose, or been completely denied health coverage!  Imagine telling a survivor to cover their own ass because they had cancer as a child!!!!

I am ecstatic about this.  I could argue against other decisions made by the administration...but I could with any administration, that's life.  As I said, I'm not getting political, I just want to celebrate this milestone and acknowledge all the beautiful children it will help in the future.

Postaweek2011 - if I could Pass Any Law...

 

People Against Childhood Cancer

Okay, here is the next attempt at responding to the prompts provided by the Postaweek gang.  It is controversial because it is an ideal...I know it could never be put into effect...but it is my ideal!

Creating a law that forces people to do something for someone else may be taking the role of Government too far, But what about just asking people to learn about people who need help and then letting them decide what to do with that information?

My law would never take effect because it would rely too much on the ability of humans to change behaviors which many argue are part of our wiring. Many would also argue it is unconstitutional.

I would love to have a law that, in some meaningful and doable way, required every one of age to spend 30 minutes per month learning about other people who need help in some way.   It could be major issues like children fighting cancer, refugees being slaughtered, or victims of a natural disaster. Or it could be small...local neighborhood food drive, elderly assistance, literacy programs for young, underprivileged children.

I am not even asking that people act upon what they learn...forced help is begrudged and less effective, perhaps destructive. But if everyone had to take a look at others' plights, I believe two things may happen: firstly, we will appreciate our own lot slightly more. Secondly, we may even get charged up enough to tackle one of the issues and actually, willingly help.

This idea could cross over into learning about issues such as global warming, wildlife preservation, domestic and child abuse....the possibilities are endless.

The only thing the law would require, however, is time for people to learn about these things and ways to help. After that, it is up to the what they do with the information.  I also believe this is a pipe dream as forcing people to look at others' troubles takes away their rights to make decisions.  It is a catch-22 situation:  how can people make informed decisions without the information?  What do you think?

Meanwhile, for those who don't need a law to encourage you  to help others in need but just don't know who to help, here is an amazing idea which I originally read on a blog I adore;  Thumbin' My Way.   On this blog I read about  Love Drop.    Love Drop is a micro-giving network of people who unite as a community to help one person or family a month. By subscribing to the team for as little as $1, they make it easy for members to change lives in a fun and easy way. Each month Love Drop delivers a unique combination of unexpected financial gifts, personal encouragement and the support of local and online communities.

This has nothing to do with leukemia...it is a way to put out good things without a selfish motive...the art of true caring.  Thanks to S for bringing  it to my attention.  I hope in its small way, it helps my "law" become practiced even thought it has not been ratified!