Saturday, September 13, 2014

Five Years Ago Today....

First day of Kindergarten

Five years ago today, my world changed.  My son, a kindergartner of only two days, was rushed to CHAM to begin treatment for High Risk Leukemia.  But we had woken up that morning thinking the world was a safe and lovely place.  School had just started and we were all excited.  Sammy was finally part of it all, a big kid at elementary school...he had so much to learn and so many friends to meet.  Except he didn't....

The rest is history.  The blog details the horrors of the first night, the feeling of despair, the heartache and constant readmissions.

Five long ago....exactly half Sammy's lifetime ago.

Today I allow myself to remember...I don't need to re-read the is all still an open wound if I let it be.  Only today...only today will I allow myself to dwell on the past.  Tomorrow I will get back to living in the present and fighting to kick cancer's ass with awareness and fundraising.  I don't do it for Sammy...I do it for those who are fighting and are about to fight.

Here is a brief look back at then...and a few pictures celebrating how far my hero has come!

Just after initial admittance - there was still some hair under that hat!

Neutropenia meant keeping Sammy germ free! 

Sammy in school...he made it into Kindergarten for about 6 weeks out of the whole year. 

Spiderman's Hero

Superman Sammy at the LTN Walk

Graduation from elementary school

Goofing around with moi!  

Doing what kids do...

"I just want to be a NORMAL kid" - Sammy 2014

Friday, January 3, 2014

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 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:

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.


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