No recognition of Childhood Cancer Awareness Month

I am amazed by the fact that there isn't anything out there for Childhood Cancer Awareness Month. We are currently living in a children's hospital and you still don't see any recognition. I even made some gold ribbons to wear, and other parents of cancer children had no clue what it was for.

I respect all of the pink out there, but I am just really wanting more recognition for the children.

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Dear Tamfaye321,
thanks for your post. My son is a cancer survivor. he was diagnosed in 1999 when he was 5 years old. He is now 15 (going on 20) and doing great with the exception of the learning difficulties as a result of the chemo. As his Mother, I make it a point to make EVERY month "Childhood Cancer Awareness Month". Once their treatment is over, it just begins and is a battle for years to come. I am grateful he is here and don't know what I would do with out him. He lost his father May of 2008 to liver cancer, so he has had his share in his young 15 years. He is my hero and one heck of a kid!!! My hat is off to all these brave children going through the fight of their lives!
God Bless!

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I agree! I even e-mailed one of the morning news people from the news station that I watch and STILL nothing! I made a ton of gold ribbons to hand out at the beginning of this month and the people I gave them to only wore them for that one day! What is wrong with these people?! Whew! sorry to vent in such a negative way. It just makes me crazy!

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We are really trying in the Inland NW. We have a local chain of Shari's Restaurants selling gold ribbon placards in their 8.locations. Also a few coffee shops , this Friday, Shotzys in the Spokane valley ......and we have been passing out gold ribbons in the hospial cafeteria. we are also teaming up with a loal foundation this saturday for a 5K walk. If you are in the inland NW, join us. Find info at www.candlelightersinlandnw.org

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thank you maryanne. you are terrific for letting us know about all the things you guys and the hospital are doing. I just get upset when the people I work with don't even take the time to do this for "a few of their own". Clay is not the only child in the school district fighting this horrid monster.

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Hi Guys,
I don't know how I missed your posting last month. I feel the same way. How can these kids be ignored? Don't get me wrong, I love Candlelighters. They sponsor a parent support group at our hospital. But after my daughter was diagnosed I struggled to find a way to make a difference. There was a piece missing. I did a Light The Night Walk. And I read a ton. I am unhappy with the Leukemia and Lymphoma Society and the American Cancer Society; where is their funding for kids? I read more and realized that even if there are photos of kids, it doesn't mean that the monies raised actually goes to pediatric research. Our community seems so splintered with lots of wonderful families doing things in honor of their children. But I kept thinking, we need to be more organized and get the federal government to step up for these kids too. After that, I became involved in CureSearch. (If you don't know them, go to www.curesearch.org) Nationwide, this seems to be the group that is doing the real advocacy necessary for pediatric cancer. They help parents storm the capital every spring for Reach the Day but their efforts are year round. They finally got a bill passed last year that allows congress to really fund research. They help parents learn about the disease and becoming an advocate if you are interested. All monies raised go to pediatric cancer research. You can organize a MileStones Walk in your area - which not only raises money, but awareness. They also have lots of little projects that you can do. I feel like each time I do one of these projects, I am educating and helping other kids. I know this posting comes after the fact but perhaps if you read it, it might encourage you and you might find a way to help join in this fight.
God Bless,
Sherry (Fiona's Mom)

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I have a 12 year old son who feels the same way. He just wants some recogintion about the cancer he is facing and other children out there are battling. By the end of October he is tired of hearing about breast cancer. He is sympathetic to those who have breast cancer but wonders why it seems that is the only cancer recognized.

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I'm a 16 yr survivor. i was dx when I was 12, now im 28. I hands down agree children need a month too! I too support pink, and ACS relay for life, but childhood cancer also needs more recognition. the major org that does it is st jude. the magnify glass and there is a month that you can buy products or donate at the movie theater and it goes to st jude.

The one thing I really like about candlelighters is that it supports research on finding treatments that work just for kids and not kids and adults. I was given adult doses of chemo and it really messed me up.

I really want to lobby congress for more funding and making stamping on childhood cancer a priority.
We need federal funds or a large organization to help get traction.

Anyone with thoughts or connections to something bigger?

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thats awesome information sherry! thats for sharing

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Besides CureSearch, you should also check out "People Against Childhood Cancer" at: http://curechildhoodcancer.ning.com
This site is designed to help connect with other people around the country going/who have been through childhood cancer, help them organize fundraisers, bring awareness to, talk...
There is also Alex's Lemonade Stand.
St Baldrick's is another one too. There is a group of moms who are going to shave off their hair this fall on tv (Oprah?). If you want more info, it might be on their site but if not send me an email. I have a friend who is participating.
Sherry

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Your in good company!
I feel exactly the same way! What they've done for Breast Cancer is wonderful and needed to be done, but our Children are fighting for their lives and its almost like no one wants to acknowledge the fact that our children are suffering.

I always had a place in my heart for St. Judes, Make a Wish and the rest...I gave money and time, but unless your really looking its easy to ignor them.

I want everyone to know how many children are fighting and battling this disease...

It makes my heart hurt to know how many children are really affected by Cancer...the world needs to wake up and take notice!

I hope everything is going well for you and I am so sorry to hear that your bound to the hospital ~ I will be praying for you.

Charlene

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Hi there,
I read your Post, and I agree with you 100% there should be a something out there for the children, that is battling cancer, All i see is pink ribbions and save the troops ribbons as well, They should be regionized as well..My Granddaughter is battling Leukemia since she was 3 1/2 months old she was in remmission and now it came back and they are only giving her less then 20% to get back in remission. She is my hero as well she has gone though alot for 8months now as she is going to be 1 years old on the 8th of Apr. She is a real fighter, I look up to her. and the other children I have met that is battling Cancer too,since i have seen alot, They are my hero's as well, We need to start a group for these children.. They are important and they are our FUTURE!!!!!!!!

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Mel,
I am like you, messed up from too much radiation 28 years ago. I want people to know our battles and what too much of a "cure" can do. Our ribbons seem to be the least noticed and the least realized out there. But I think if they attract to much attention to us old survivors they feel it might scare people from treatments. I mean because of all the health problems we are faced with from the longterm damage. Like my mother told me when visiting this week, they never told her how rough my life would be now, or how much shorter of a life I could face. But as with her I told her there was no other options let them study me or let me die, and she did what any parent would do. I am not angry at my radiation doctor as he tried to do what would save me, and I am well aware I was studied. But I lived, and there was alot that didn't. I do agree with you however people need to be more aware and alert of us and maybe the next generations of us. But I pray these younger ones don't face the health issues, and rapid aging most of us longlifers face.

Lets shout from the mountains!
your friend
Leah

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Good day everyone! My son and I are organizing a childhood cancer awareness walk! It originated through a group called Gold: The New Pink. They/we just want gold to be as widely recognized as pink! check out their website at goldthenewpink.net

This is an awareness raiser, not a fundraiser. It is meant to kick off National Childhood Cancer Awareness month in September.

The awareness walk is scheduled for August 28th and is nationwide! If there isn't one near you (check the list of people sponsoring walks in their communities) please consider organizing one of your own! Clayton and I are going to try to make this a yearly thing!

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That is great to hear! That's really exciting. I hope we can do similar walks across the country.
Have you guys been hearing about an organization is selling cookies for childhood cancer. Im in Wisconsin right now so I hear it on tv in the mid west market.
It sounds familar to alexis lemonade stand.
I haven't had a chance to check out the website yet for do more research on the cookies

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Do you know the organizations name? the one that is doing the cookie thing? You can respond to this site or my personal e-mail. I would like to know more.

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I am glad to hear your story. People have no idea what we are putting our children through. We are trying to save there lives by breaking them down. My daughter had lost her ability to walk. Praise God, with physical therapy and time, she can walk again. She has lost her hearing to a degree that she now needs hearing aids. We were told of all of the other problems and potential cancers that she can get just from this treatment. It hurts so much to know how we have to harm her to heal her. I pray that one day we will have the success rate (with as little damage as possible) as Breast Cancer and the such. Thank you for sharing.

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I am so glad that now you are aware of the dangers. My mother has a hard time today as they never knew the dangers 28 years ago. I have told her over and over not to blame herself but I know as a parent myself you never want to have to willingly put you child in harms way. As a realist there is no other option in these cases. I pray every day that children like your daughter will grow up healthier and happier as meds and doctors improve treatments. You are so right nobody realizes the trueths.

My mom knew up front I was a study case and agreed to such, and I don't blame her for a thing. She let them explore and treat me as they needed, and as my "follower" as I call the ones who longterm watch my "progression" as they call it said to me one day., "Leah there was no pamplets to give your mother, children like you are who we based our pamplets on." So I get a peace hearing atleast they warned you of some dangers up front.

The world just needs to be aware of our existance and of the battle children face dealing with cancer treatments. In whole, "It is no walk in the park."

Thank you so much for sharing.
Never loose Faith!
Leah

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