September 16, 2007 - raising awareness

Keira continues to do well. Her biggest concern seems to be how many bananas we will let her eat in a given day. We will return on the 26th for more labwork and then next month we will have another CT scan. The focus of today's post isn't Keira, it is others like her who are battling this disease.

September is pediatric cancer awareness month. I haven't written a post about this until now because quite honestly I feel overwhelmed by what I have learned in the past 6 months. I feel helpless to help not only Keira, but any of the precious children I have met and heard of since Keira's diagnosis. We are incredibly blessed that God is healing Keira in such an amazing way, but she is beating the odds. Here are some facts

- One in 330 children will develop cancer before the age of 20

- By the time they are diagnosed with cancer, approximately 20% of adults show evidence that the cancer has already spread to other places in the body outside of the original location of the tumor. In children, it is far worse. By time a child is disgnosed with cancer, over 80% of them will have this distant spread of the cancer.

- Pediatric cancer is the number one disease killer of children, killing more kids than Cystic Fibrosis, Muscular Dystrophy, Asthma, and AIDS combined

- Neuroblastoma accounts for 7-10% of chldhood cancers and well over 15% of deaths, yet receives only 5% of research dollars from a national pediatric cancer fundraising initiative

- Neuroblastoma has a less than 30% chance of survival when there is evidence of distant spread at the time of diagnosis.

- The National Cancer Institute's federal budget designates 12% for breast cancer, 7% for prostate cancer, and all 12 major groups of pediatric cancers combined receive less than 3% of the budget


I am not saying that Cystic Fibrosis and Breast Cancer don't deserve funding - THEY DO. However, I had no idea what the statistics on pediatric cancer were before Keira was diagnosed, nor did I realize how severly underfunded research was in this area. If you haven't, please take time to write your congressmen. Let them know that you are concerned that we are letting so many kids down.

There are organizations set up to specifically fundraise for Neuroblastoma. Many of you have already donated to Lunch for Life - Thank you. A campaign is currently going on called the Loneliest road campaign. 6 fathers are cycling across the US from San Francisco to Washington DC to raise funding and awareness for neuroblastoma. They are trying to fund a specific treatment. You can read about their campaign at http://www.loneliestroad.org/

Please share what you learn. Send an e-mail to a friend, write an editorial to the paper, tell your neighbor. Alone I am not sure I can really make any difference in the lives of these kids, but if we each do a little, I hope we can make a real difference.

Erin