Originally Posted for Four Square Clobbers Cancer: http://4sqclobberscancer.com/
Thank you to Joe Baber for his assistance in preparing this blog. I couldn’t have done it without his assistance!
Since my son Steven’s diagnoses with Stage Four Osteosarcoma over 7 years ago, followed by a diagnosis of Secondary Acute Myelogenous Leukemia, which required a lifesaving Bone Marrow Transplant, I have learned a great deal about PAYA (Pediatric, Adolescent and Young Adult) Cancer.
I tend to obsess over these issues each and every time I hear about another young person being diagnosed with cancer. I obsess when I meet someone who is fighting for their life from cancer that is not the result of life style behaviors.
So what am I getting at? This morning I had a revelation!
Rock Hudson was a handsome movie star during the 1950’s and 60’s. During his youth women loved him! For over 30 years Rock was seen in movies and television. He left the public eye for a few years and then attempted to make a comeback. In the early 1980’s he returned to television to starin Dynasty with Linda Evans. Audiences were shocked at his appearance. What happened to Rock? Was he ill? He looked so gaunt! This isn’t the Rock we remember!
Sadly we later learned that Rock had AIDS. The public was shocked.
Rock Hudson provided a catalyst to the AIDS MOVEMENT. His diagnoses and death was the reality check needed for our society to realize that ANYONE COULD GET AIDS. After his passing, the entertainment industry embraced and used the legacy of Rock Hudson tocreate awareness about AIDS. One of Rock’s leading ladies of the movie era, Elizabeth Taylor took on the task of creating awareness for this terrible disease. There was a complete and total assault on AIDS in the Media and Entertainment Industry.
Since 1981, 1.7 million people were diagnosed with AIDS. Since 1981, approximately 619,000 have died from AIDS in the United States. Fortunately for AIDS Research, the media and the entertainment industry saw fit to create AIDS awareness which resulted in the development of very effective efforts to fund AIDS research and prevention programs. Apparently the attention caused by Rock Hudson, and the work of the media and entertainment industry since then were very effective! Today, AIDS is more treatable than ever before, and fewer people are dying each year from this tragic disease.
What does this have to do with Steven and all the other PAYA’s diagnosed with cancer?
Well, our children, adolescents and young adults with cancer have not been so fortunate! We have not experienced a media blitz to raise awareness. Yes, progress has been made for some life threatening cancers, but what about the more rare forms of the disease?
The National Institute of Health/National Cancer Institute (NIH/NCI) budget will provide only $195 million to Childhood Cancer Research (for ages 0-19 years) for 2014. This amount has decreased for the last several years. If you consider the effects of sequestration and inflation, you could say childhood cancer research funding is down 30% over 2008! To put aids funding in perspective to cancer funding, consider this: While the entire budget for all cancers, adults and children, is $4.9 billion, AIDS research is more than half at 2.9 billion! An estimated 15,529 people with an AIDS diagnosis died in the US during 2010 compared with 569,490 who died of cancer. Do you see a discrepancy here?
Every year 2,700 children (0 – 19 years old) will die from cancer. That’s 17% of the children diagnosed with cancer. What about the survivors? Do you recall Joe Baber’s report last week? To paraphrase Joe “even when a child reaches the 5-year survival milestone (an arbitrary number), they are still at risk of long term effects…When we talk about “cure rate” it never mentions that more than 90% of those “cured” have serious or life threatening side effects or even secondary cancers caused by the treatment.”
What about AYA (adolescents and young adults’ ages 15 – 39 years) with cancer? Cancer is the leading cause of death (excluding homicide, suicide and unintentional injury) in this age group. In males, besides heart disease, cancer is the leading cause of death. In women it is the leading cause of death (Bleyer, Viny, & Barr, 2006).
Where is the Media? Where is the Entertainment Industry? PAYA Cancer shouldn’t be relegated to Special Interest Blogs by heartbroken parents who have lost their children or PAYA Cancer survivors sharing their stories. PAYA Cancer shouldn’t be a sound bite on the evening news that highlights a Walkathon by a few hundred parents and children during the month of September (childhood cancer awareness month) or about a young man or woman bike riding across the country to raise money for a specific cancer. MORE NEEDS TO BE DONE!!!
We appreciate last year’s STAND UP TO CANCER television program highlighting Taylor Swift’s awesome song “Ronan” but MORE NEEDS TO BE DONE!!! After the Stand Up To Cancer Program, did you hear the song “Ronan” played on the radio? Did it make the TOP TEN?
We appreciate all of the wonderful childhood, adolescent and young adult cancer organizations raising awareness and providing support to hundreds of families each year…..BUT MORE NEEDS TO BE DONE!!
We appreciate movies like 50/50 creating some awareness (a rather light hearted attempt at that) of the stresses and fears that a young adult experiences when diagnosed with cancer, BUT MORE NEEDS TO BE DONE.
Where is our ROCK HUDSON???
Is there some way the media and our society can come to an understanding that we parents and family members also grieve each time we lose one of our children to cancer?
The other day, I was reminded of parental pain of loss when I watched the news as a couple grieved over the loss of their child who was murdered at Sandy Hook Elementary School.
How often are parents asked to share their grief over the loss of their child to cancer on national television?
Is the grief of parent who lost their child to cancer any less than those unfortunate families at Sandy Hook? Where is the shock? Where is the disgust?
Who will champion the cause of Pediatric, Adolescent, and Young Adult Cancers? What will it take for the media to dig in and help? How many more children will we lose to Brain Tumors (a childhood cancer that is increasing in frequency every year)? How many teenage boys and girls will lose their limbs or life to a Sarcoma (where treatments haven’t changed in over 30 years)? How many young adult women will die of Breast Cancer (as this age group is more likely to die than any other group)?
Where is our champion? Who else needs to die for the cause?
A coordinated community effort is underway to storm Congress – on foot and online. Childhood cancer organizations throughout the country are joining together to send Congress the message of #StepUp: More Funding for Childhood Cancer Research.
History will be made when 250+ advocates come to Washington, D.C. for Childhood Cancer Action Days on June 23-24. We need your help to make sure our voices are heard loud and clear by members of Congress.
There are many ways for you help with this community campaign:
THANKS TO PAC2 FOR ALLOWING SGAYA TO COPY THIS INFORMATION IN ORDER TO SHARE WITH YOU!!!
PAC2 is proud to be part of this groundbreaking coordinated effort, and we thank the many terrific organizations that worked together to make this happen. In the coming week, we’ll take one step in a long journey toward more federal research funding and better treatments for kids with cancer.
For some background information on the funding issues at the heart of this campaign, please see:
Please join in this coordinated community effort as we #StepUp in support of funding for childhood cancer research.
On April 23rd, 2014, I boarded an airplane in Cleveland, Ohio, and flew to Las Vegas for the first time in my life. This was thanks to the financial support of the Steven G. AYA Cancer Research Fund. The fund’s generous travel scholarship paid for me to attend the OMG! Stupid Cancer conference for young adult cancer survivors, which was held at the Palms Casino Resort. The conference is a wonderful event that allows cancer survivors in the 18-40 age range meet, network, and have a good time over a long weekend. It is so life affirming to meet others that share your life experiences, especially when a major challenge for young adult survivors is the loneliness you often feel, because it seems you are the only one going through what you are.
The conference is a nice blend of official, cancer related events, and free time to explore and enjoy all that Las Vegas has to offer. The event included an official tour of The Strip, a pool party, dancing on the 55th floor of the Palms, and even pub trivia with your fellow attendees! There were great speakers and talks on topics like Genomics, being LGBT with cancer, meditation, and managing your anger. The conference was inclusive and welcoming, and was a great chance to really air your feelings, and feel like you matter. My favorite event of the entire weekend was the Just For Gals: Nothing is Taboo talk, which included guest speaker Tamika Felder, who is a personal inspirational figure of mind, on both cancer survivorship and body image. Like the entire conference, this session was patient focused, and emphasized being able to speak freely about issues that can be difficult to talk about, such as fertility, reproduction, body image, family relationships, and friendship.
In addition to meeting some great people, my boyfriend (who attended with me) and I rode the High Roller Observational Ferris Wheel, which just opened in early April 2014. It gave a perfect view of the Strip, as well as the surrounding red rock and mountain-filled desert. The Las Vegas Strip is truly a unique experience that must be experienced to be believed. Only in Vegas can you see the Eiffel tower, the New York Skyline, and an exploding volcano, all within one mile!
I view this experience as a once-in-a-lifetime opportunity that I was given because of the philanthropy of those that run the Steven G. AYA Cancer Research Fund. I think this is a very worthwhile charitable action on the part of this group. Research can be scientific to be sure, but it also includes meeting and networking with those that share your experiences. It was also great to have a representative from Ohio present, to bring even more diversity to the conference. I am forever grateful to this organization for helping to give me such a wonderful experience.
Patricia O’Donnell, Community Relations Coordinator
EarthFare Supermarket, Fairview Park, Ohio