Sunday, November 15, 2009

Michelle Obama and Joe Sastak

When Tyler was diagnosed with cancer, I responded the way I respond to every thing. I guaranteed Tyler that we would win this war, and I sat down to create a road map to accomplish that promise. It's very simple really. Find the plan that works, commit to sticking to the plan, get the best doctors and hospitals, and follow through to success.

However I quickly learned the extent of my ignorance. I learned a very ugly reality. There is no plan. We operate in the dark. It is true that there are general plans, generic protocols, that work on some kids. But no one knows why they work on some and not others. No one knows why some relapse and others do not. How do you make decisions without this information?

Even the statistics from doctors provide little information. If they say your child has a 50% chance, they are not even talking about your child. They only mean that, on average, 50% of kids on that treatment are alive in 5 years. That statistic is based on all kids in the treatment, averaging various stages of cancers and varying health issues. They cannot tell you if your child is more similar to the half that lived or the half that died. In most cases that data is not even available. But we are forced to choose between different treatments using this incomplete. Some will die. Some will relapse. Others will have life long complications. And we will never know why, and never know if a different decision would have altered the outcome. We operate in the dark.

At the time of Tyler's diagnosis, I was completely ignorant of the lack of progress in childhood cancer. I did not know how blind we were in fight cancer. Less than 3% of cancer research money goes to childhood cancer. In the past 30 years there has been only one new pediatric cancer drug introduced to the market. The result is that cancer is the leading cause of disease death in children. One in 300 children will be diagnosed, and every day 7 will die.

So what do we do? We need more funding, which begins with awareness. My first step in awareness came the day my son was diagnosed with advanced stage IV Burkitt's lymphoma and leukemia. It is my hope that others will discover the truth through far less dramatic circumstances. I hope and pray they learn through us spreading awareness.

Candlelighter's Childhood Cancer Foundation will be holding the Annual Tree Lighting in DC on December 12, 2009. They have invited both Ms. Obama and Rep. Sestak, who chairs the newly founded Pediatric Cancer Caucus. Having both attend would be fantastic for the news coverage and awareness it would generate.

We'd like your help encouraging them to attend. A demonstration of the size, strength and passion of the childhood cancer community. Besides PAC2; Alex's Lemonade, Rally, St. Baldricks, CureSearch, Rock Against Cancer, kidSTRONG, Team Unite, Frankie's Fight, Max's Ring of Fire, Aimee's Army and other CC orgs have committed to publicize and or/participate.

WHAT TO DO

■Fax invitations to Ms. Obama's scheduling team at 202-456-2326 and/or email at firstladyscheduling@who.eop.gov
■Fax invitations to Rep. Sestak's office and include his wife and daughter (Susan and Alexandra) at 202-226-0280 and/or email here
■If anyone wants to fax or email your local reps, this link will help you find the information you need
■you can send free faxes here
■the number of faxes is about 1% of the number of emails these officials receives on a daily basis, so a large number of faxes will stand out

WHAT TO FAX and/or EMAIL

Obviously that is up to you, but to maintain a common theme please include language along these lines:


TO: First Lady Michelle Obama Or Representative Joe Sestak
RE: Childhood Cancer Awareness Tree Lighting 2009
Dear ­­­­­­­­­­­­­­­­­_______________,

I am writing to encourage your attendance at the Candlelighter’s Childhood Cancer Awareness Tree Lighting Ceremony on Saturday, December 12, 2009, at 6:30pm EST, in the Old Post Office Pavilion. The Ceremony is held in honor all of the children who are fighting, or who have fought, Childhood Cancer. There will be hundreds of children and families in attendance who fight or have fought this vicious disease, the leading cause of death by disease for children through age 20.

This link will provide you more information on the event: http://www.candlelighters.org/Awareness/AnnualTreeLightingEvent/tabid/405/Default.aspx

My son/daughter/neighbor/sister/brother _______(insert personal story as desired)

Each year in the U.S. there are approximately 12,500 children between the ages of birth and 19 years of age who are diagnosed with cancer; two school classrooms every day. About one in 300 boys and one in 333 girls will develop cancer before age 20. Last year, about 3,000 died of cancer, thus making cancer the most common cause of death by disease for children and adolescents in America.

Childhood Cancer will spare no socio-economic boundaries and does not discriminate among gender, race, religion, age, or ethnicity. Childhood Cancer is a debilitating, life threatening illness that carries a substantial physical, emotional, and economic burden for the entire family.

We would be honored, _________, if you could attend the Childhood Cancer Tree Lighting Ceremony. The awareness you would bring by attending would benefit children across the country. Please come and honor these special children. We deeply appreciate your time and consideration.

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