Sunday, Jan. 20, 2008

It is with a heavy heart that I post today. Three fellow brain tumor warriors died in the last 3 days, unbelievable. Twelve year old Stash diagnosed with medulloblastoma, then relapsed with glioblastoma died on Friday. Our sweet Julian, only four years old died on Saturday and three year old Tyler died from medulloblastoma today. I just posted Julian's website here on Friday, and Julian died yesterday, finally up with God and free of any more pain and suffering, only about 4 months after his medulloblastoma recurred. I just don't believe that so many of our children are still dying from this cancer. Not enough is being done for research in the field of pediatric cancer. Bet you didn't know that only 3% of all money budgeted for cancer research is designated for pediatric cancer research. That's not enough. If I can name three kids who died in the last three days of cancer, it's just not enough.
Some information from the Children's Brain Tumor Foundation, and other unknown facts:

Today, as you read this, 9 families across America will learn their child has a brain or spinal cord tumor. A father will cry alone in the shower. A mother will be numb with grief and fear.

Maybe 9 families are too few to matter. Pediatric brain and spinal cord tumors are, thankfully, a rare disease in America. Only 3,400 new cases each year. Only the equivalent of 200 elementary school classrooms full of children.

Today, 3 families across America will bury their child who has died of a brain or spinal cord tumor. Friends, family and community will try to make sense of an untimely death and the unfulfilled promise of a life. Brain and spinal cord tumors are the deadliest childhood disease. The 5-year survival rate is lower than for any other childhood cancer.

Today, 6 families across America will help their child transition to survivorship. A mother will be too exhausted from providing constant care to her child to simply write checks to pay bills. A child surviving a brain tumor oftentimes faces ongoing physical and mental challenges. Surgery, chemotherapy and radiation can cause permanent damage to a young and growing brain.

Today, there are, happily, over 20,000 pediatric brain and spinal cord tumor survivors in America today. But, they and their families face many challenges to living an independent and fulfilling life.

-There are over 120 different types of brain tumors
- Cancer rates among children are increasing by 1% per year. No one knows why.
-12,000 children every year (33 children each day) are diagnosed with some form of cancer of which 35% (4,200) do not survive
-3,400 children every year (9 children each day) are diagnosed with some form of a brain tumor of which 40% (1,400) do not survive
-Cancer is the number one killer of children by disease. It is the second leading cause of all childhood deaths exceeded only by accidents
-One in 330 children will develop cancer before the age of 20
-Each year, about 3,000 children die from cancer - more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined
-Only about 20% of adults with cancer show evidence that the disease has spread to distant sites on the body at diagnosis yet 80% of children are diagnosed with advanced disease.
-In the past 20 years only ONE new cancer drug has been approved for pediatric use
-Only 3 % of the budget from the National Cancer Institute goes towards Pediatric Cancer research. (That's 3 % for ALL kinds of Pediatric Cancers combined!)
-The cause of childhood cancer is unknown
-Cancer rates among children are increasing by 1% each year. No one knows why.
-Approximately 70% of children with cancer participate in research trials compared to only 3% of adult cancer patients. As a result, many of the advances in adult cancer treatments are due to breakthroughs in childhood cancer research
-The government recently CUT the budget for Childhood Cancer research
-As a nation, we spend $14 BILLION per year on the space program, but only $35 MILLION on childhood cancer research per year
-The symbol for childhood cancer is the gold ribbon

Food for thought. Not very appetizing. xoxo Kim