Wednesday, September 1, 2010

Childhood Cancer Awareness Month - SEPTEMBER


My daughter has strength I only wish I had. Now usually I discuss my daughter's other disease, ROHHAD Syndrome, but she was actually diagnosed with two and the other is Ganglioneuroblastoma Cancer.

After over 2 years of asking for a diagnosis we received it in 2007 - December 28th at 7:30pm. It's a phone call you can never forget.

"Mrs. Fowler, your daughter has cancer. You will be contacted by an Oncologist in the next 24 - 48 hours."

Only to find out after visiting many doctors that she actually is diagnosed Ganglioneuroblastoma Cancer and ROHHAD Syndrome. To get hit with one of these is devastating.......but two different life-threatening diseases! How the hell can this happen?

Our daughter underwent a 14 hour surgery to remove a tumor in her abdomen that was wrapped around both the Inferior Vena Cava and Abdominal was pretty close to cutting them off from supplying her body with blood. Two major arteries. During this surgery she also had a cath-o-port put in and a spinal tap with a bone marrow withdrawal.

Some general facts about childhood cancer:
  • The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and ALL 12 major groups of pediatric cancers combined received less than 3%.
  • Each day, 46 children are diagnosed with cancer
  • One in 330 children will develop cancer by age 20
  • 35% of children will die from cancer
  • Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined
  • On average a treatment for childhood cancer diagnosis is two years
  • The causes of childhood cancers are largely unknown

Neuroblastoma Cancer Facts:

  • In the United States, about 600 children are diagnosed with neuroblastoma each year
  • Every 16 hours a child with neuroblastoma dies
  • For children aged 1 to 4 years at diagnosis, 5-year survival rate improved from 35% during 1975-84 to 55% during 1985-94. Survival at 5 years from diagnosis was essentially unchanged over these time intervals among infants (83%) and children 5 years or older (40%).

Cancer Research Funding

  • Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
  • Pediatric AIDS receives 4x the funding that childhood cancer receives.
  • In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.

1 comment:

  1. Dear Misty,

    Praying that September will be more widely recognized as Childhood Cancer Awareness month and that more will be done to help find a cure for childhood cancers.

    I'm so glad that approval was finally given so that the film can be made of Haven's journey with ROHHAD.

    Please tell Miss Haven that I said a big hello to her and that I hope she has a super-duper weekend.

    Still remembering Haven and family in prayer.

    With caring prayers,