Tuesday, May 1, 2012

Brain Tumor Awareness Month

May is Brain Tumor Awareness Month, and we are getting ourselves ready to spread the news.  We spread awareness about all brain tumors in May, but I am particularly concerned about pediatric cases, mainly because I had no idea that this could happen to a baby before it happened to us. 

Like last year, I plan to post an FAQ about Scarlett and our experience with congenital (and pediatric) brain cancer.  If you have a question, you can e-mail scarlettgrace2010[at]gmail[dot]com, or leave a comment here.

  • More than 600,000 people in the US are living with brain tumors.
  • Every year, nearly 12,500 children under 20 years old are diagnosed with some kind of cancer in the US.  About 4,200 of those kids have Central Nervous System (CNS - brain and spine) tumors.  11 more are diagnosed every day.
  • Less than 2% of CNS tumors are in newborns - Scarlett was one of approximately 85 babies born with brain cancer in 2010.  The majority of those babies did not survive their first months.
  • 3 children die every day due to a brain tumor.  Brain tumors remain the deadliest form of cancer in children.  Some tumors, like AT/RT and Glioblastoma Multiforme (GBM), have less than a 20% survival rate.  Diffuse Intrinsic Pontine Glioma (DIPG) has less than 10% survival rate.  Brain tumors are the leading cause of cancer-related death in children.
  • Not all brain tumors are malignant, but even benign tumors can be deadly.
  • There are more than 120 different kinds of brain tumors, some which occur almost exclusively in very young children, like medullablastoma, and others that are very rare like GBM.  Each kind of tumor has a different pattern of behavior, and requires different treatment.
  • While survival rates of pediatric brain tumors have increased over the last 30 years, side effects from tumors and treatment, including subsequent cancers, is a lifelong battle and most will continue to require monitoring, treatment and therapies. 
  • There are currently about 110 clinical trials being performed on children with brain tumors in the United States.  Only two new treatments for brain tumors have been approved in the last 25 years.
  • Like most pediatric cancers, there is no known cause of brain tumors, and no way to prevent them.  They affect every race, ethnicity, geographic region and socioeconomic status. 
  • Brain tumors are located in children’s control center of thought, emotion and movement, often resulting in long-term side effects. Survivors can have physical, learning and emotional challenges that will limit the quality of their lives into adulthood. 
I used to ask how having a ribbon magnet on your car or wearing a certain color for awareness was helpful.  How was my shirt color going to help someone?  But now I know: The only way to find cures for these children is RESEARCH.  Research requires FUNDING.  Funding comes from people who are AWARE of the problem.

We choose to support the Pediatric Brain Tumor Foundation at our annual blood drive (coming again in October to celebrate Scarlett's birthday) and whenever possible.  PBTF directly funds researchers who cannot otherwise secure funding due to the "rare" disease they choose to study.  Just recently, a research funded in part by PBTF funds published a major breakthrough in treating some of the most deadly of tumors - metastasized secondary tumors (those that have spread).  
Thanks to the Wall of Courage, Scarlett has her own line of Brain Tumor Awareness gear.  The Wall of courage was developed by a mom who lost her daughter to a brain tumor.  Now she promotes awareness and raises funds by creating badges that can be printed on gear from CafePress.  All proceeds from Wall of Courage gear goes to the Children's Brain Tumor Foundation.

Kids like Scarlett deserve a cure.  Wear gray, share her story and help us fight!


Amy said...

I am a pediatric nurse practitioner and have followed Scarletts story from day 1! I found her story on baby center (My daughter was born Sept 2010). I have recently had another little girl diagnosed with a brain tumor (AT/RT). She was 11 months at diagnosis (in January) and has been given less then 10% chance of survival. I have been wearing gray for some time now and will continue to support all of these children who need our support. I pray everyday that Hartlee does as well as Scarlett. It is stories like Scarlett's that give me hope for all of the other children who are battling this awful disease. Please visit Hartlee's facebook page (Hope for Hartlee) and say a prayer for another beautiful little girl.

Molly said...

Hi, this is my first time commenting on your blog since I found it a couple of months ago. I have a daughter a few months younger than Scarlett and I'm in medical school now so I find your story fascinating, tragic, unbelievable and incredibly uplifting all at the same time. I sobbed for you when I read your diagnosis post and I cried tears of joy over a few of your others. Scarlett is a truly amazing little girl. I just wanted to thank you so much for sharing your story. You are doing a wonderful thing. I will continue to pray for your family.

Brandi Wecks said...

@Amy - I read some of Hartlee's page, and it's all too familiar. I will add her to our list of regular pages.

@Molly - Thank you. I wish more medical personnel heard what it's like from the parent/patient side.