September 30, 2007 - Thank you!

Keira continues to do well. She had an appointment down at Children's this past week where aside from some low blood counts everything looked good. We are still waiting on the results of her urine tests, but don't expect that they will be abnormal. Her doctor was happy with her progress and plans to repeat her scans next month. If everything still looks good, she will get her port out! That will be great!

We wanted to thank you all for your support and efforts on Keira' behalf. I received the following e-mail today and wanted to share it with all of you. The letter is from the Children's Oncology Group (COG) regarding the Conquer Childhood Cancer Act:

Throughout September, parents, grandparents, survivors, nurses, physicians, friends and families have sent more than 4,000 letters to Members of Congress, to tell them that funding childhood cancer research needs to be an urgent national priority. These letters have effectively conveyed to our national leaders what childhood cancer feels like: from the life-altering day of being told of a child’s cancer, through the long and difficult days of treatment, to many examples of courage and inspiration from the children, to the promise of a cure mixed with the devastation of loss.
The power of your letters has been overwhelming. On September 25th, in honor of Childhood Cancer Awareness Month, Congressional resolutions were passed in both the House of Representatives and the Senate, expressing the intent of Congress to "…support efforts to increase childhood cancer awareness, treatment and research."
This month alone, the strength of your letters has influenced another 26 Members of Congress to become co-sponsors of the Conquer Childhood Cancer Act, bringing the running total to 146 Representatives and 37 Senators. We edge closer every day to passage of this legislation, which will make a meaningful difference in the lives of every child diagnosed with cancer - today and in the years to come.
On behalf of the more than 5,000 Children’s Oncology Group researchers who devote their lives to curing childhood cancer, thank you for your support. Step-by-step, we are reaching people; we will not rest until we Reach the Day when we have cured this disease in children.
It has been a magnificent September for CureSearch, and for all who want to end this disease. But while September may be over, childhood cancer is not. Every month represents another opportunity to move forward and spread the word. I thank you for all you are doing on the behalf of children with cancer. I urge you to continue to do all you can to help; our children deserve nothing less.

As you can see, we are making a difference! Please continue to spread the word about the reality of childhood cancer, and the desperate need these kids are in. Thank you!!!

Erin

PS - Does anyone know how to get a very sleepy 18 month old to take a nap?

Sept 24, 2007 - Dinner and cancer

Here is an easy way to help fight childhood cancer. All day today, Chili's resturants nationwide are donating 100% of thier profits to St. Jude's Hospital. If you are thinking of going out for food or just don't want to cook or you simply want to support the fight against childhood cancer, please consider eating at Chili's today!

Jason

http://www.stjude.org/corporate/0,2516,410_2034_23696,00.html

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