Can you guys help?
Posted on: Sun, 11/05/2008 - 02:18
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Can you guys help?
I am writing to ask that you consider signing a petition that I started this week. The petition came out of watching the 20/20 TV show with Randy Pausch, author of The Last Lecture. As I sat there, grieving the loss of my 14 year old son AJ, I tried to think of the last time I had ever heard the words childhood cancer mentioned ANYWHERE, much less a major TV newsmagazine. Of course, I had heard them in our life's too many times over the past year. You see AJ was admitted to TX Childrens on Fathers Day 2007 and diagnosed with Burkitts, a very aggressive but highly treatable cancer. You can imagine the rest of the past year.
AJ was a remarkable young man, the light of our life's, totally healthy and athletic, and just a joy to be around. He fought a gallant, honorable, oh so difficult battle. I miss him more than any words will ever be able to describe. But I also knew AJ. I was by his side every night and day thru this journey. We spoke of things that I had never spoken to another human about, about life, self, god, death, the unknown, fear. The basic elements of communication. And I know AJ wanted me to do something.
So – here's the deal, after watching that show, and thinking to myself, I've NEVER seen a show on Childhood Cancer. His book is #1 still on Amazon a month later. How can we make this work? Well, not sure if this is the best/right/wrong idea, but I gotta lead you somewhere after all this. Please visit.....
http://www.thepetitionsite.com/1/CureChildhoodCancer
that is the link that I hope you would consider for your site. I just got it up and started publicizing a couple days ago. Mostly working thru CarePages & Caring Bridge sites with other parents. Any ideas you may have for further distribution would be appreciated too.
There is more on AJ is at www.carepages.com, page name is AJsspace. Thanks for looking, and hopefully, signing and passing it to others.
AJs Dad
Wake Forest, NC, USA
ajsdad4227@gmail.com
Think there is more publicity in UK, and local news often has stories of requesting donors/ sponsorship for hols to Disneyland/ survivorship/ and recent one about parent who successfully campaigned in Leicester because the food in children's cancer ward was real Muck-in-a-Truck stuff. She accosted the Hospital Management and got appetising meals for the children's oncology ward. However, individual attitudes are very much that healthy people don't want to even think about it. Recently my friend took me shopping at a big supermarket. An elderly man was standing with collecting box for Children's Cancer funding. I was disgusted at number of people pushing trolleys laden with alcohol, expensive junk food, and consumer goods who ignored him. OK I only put a bit in, but I'm now on benefits and trying not to worry about dwindling cash and no way of earning any money again. I shall try now to sign your petition, but I had difficulty signing a NZ one yesterday against cats and dogs being skinned alive in China, because the petition kept demanding that my "state" didn't exist, and my "zip code" ditto. Anyway, best of luck with your awareness-raising. It is at least some consolation that you had so many significant discussions with your son: there are many parents who never get round to talking in this way to their children. xxx Penny
PS It did accept my details. I have asked for anonymity as I don't want spam about quack cures.
Penny
The above was the first time that I have contacted any American site. To sign the petition one had to leave one's email. Unfortunately today I have received a scam email from an Americal lawyer. It may be nothing to do with this: I certainly hope so, but someone may be hacking into that petiton site, so please will everyone else be extremely careful. Thanks xxxxx
Penny
thank you for letting us know that, i already get enough spam mail as it is, i will wait to see if you get more scam before i try it
lots of love
Alisonxxx
i am not positive, i am realistic
Hi,
First very sorry about your lost. In french I will say "mes sincesres condoleances" (soory I don't know to say that in english yet.
I am just wondering why you don't use this website for the petition :
http://petitions.pm.gov.uk/
This is an official website, secure and you can create your own petition.
Try it, I signed for :
'We the undersigned petition the Prime Minister to Agree that
if a Cancer Drug works, then it should be freely available on
the NHS.'
and never receveid any spam. THis is promoted by the PM...
Thank you
David
maybe because there is something fishy about that site he's used. Since then I have had regular supply of scam-mail, following the above Crooked Lawyer, with a selection of fake Bank emails, and some very emotive appeals for - well, I don't know what as I just press "Delete" now immediately. I have not been in touch with any other odd sites before or since. Yes, David the UK official one is fine for us here in UK, but I don't know whether the US run a national official one.
See you've turned your Profile into mini Art Gallery, David. Do you do a lot of painting? xxx Penny
Penny
Maybe you can help me with my qestion. I'm searching the internet for cancer since my dad got diagnosed two weeks ago but all I could find are sites like this about mesothelioma so far but that's not really what I'm looking for. Does anyone know websites, books about treatments for mesothelioma patiens, etc.? Thank you very much in advance for the information.
The purpose of life is a life of purpose. - Robert Byrne
Have you tried talking to the help line on here. They are a mine of information and a really good place to start.
And please keep us informed too. We are all learning so much about eachothers C's. In the future we can pos help someone else. Also we do all care about everyone that we hear about, that has been affected in one way or another.
Lots of love and best wishes
Debbie and April xxxx
my glass is always half full
I appreciate that you folk have even looked at the petition. We are now at nearly 9,000 signatures. And I have received over 200 offers of stories for the book. First off - I have not gotten one spam email from the petition which includes my email, nor has anyone written complaining of spam email. Although I am not a big believer in coincidences, perhaps this may actually be one.
The petition was re-organized for simplicity and straightforwardness. I am now working with CureSearch, the largest US group fighting childhood cancer, and LIVESTRONG, Lance Armstrong's foundation, to further publicize the grassroot effort.
Thanks for caring, writing, and hopefully signing and passing it on.
AJs Dad
I found this really useful-it's American, but a lot of it is relevant and quite accessible. Lung Cancer & Mesothelioma by Howard A. gutman.
I got mine from Amazon.
hope this is helpful although it's a while since you posted question.