Friday, September 3, 2010

Hyundai Hope On Wheels

I was amazed to see this commercial on prime time TV tonight.  It’s the first time I’ve ever seen (or noticed) anything on TV that mentioned Pediatric Cancer Awareness Month.

Hyundai Hope on Wheels

The State of Pediatric Cancer Research Funding

Check out this article that describes the realities of research funding for pediatric cancers.  Some of these facts are really disturbing.  The only way we are going to improve survival rates is through research and the amount of money going to research is so disproportionately low compared to adult cancers, it’s no wonder that survival rates for children has remained relatively flat.

  • The National Cancer Institute (NCI), which is part of the US Department of Health, has a $4.8 billion budget.  Of that, $173 million, or just over 3% is given to research for pediatric cancer.
  • The American Cancer Society, the largest charitable organization dedicated to cancer support received $1 billion in donations.  Of that, only $4 million, or less than half a percent went to pediatric cancer research.
  • Note that this money is for ALL pediatric cancers, so the amount going for brain cancer research is just a percentage of that.
  • Pharmaceutical companies have little incentive to develop treatments for children due to the relatively small target population.

Thursday, September 2, 2010

Brain Tumor Symptoms

The following symptoms for brain tumors are from the National Cancer Institute.

  • Morning headache or headache that goes away after vomiting.
  • Frequent nausea and vomiting.
  • Vision, hearing, and speech problems.
  • Loss of balance and trouble walking.
  • Unusual sleepiness or change in activity level.
  • Unusual changes in personality or behavior.
  • Seizures.
  • Increase in the head size (in infants).

Several months before Isabella was diagnosed, she would wake up with severe headaches, sometimes vomiting.  It happened frequently enough that Julianne would track when it happened so we could report it to the pediatrician.  The pediatrician informed us that migraine headaches were common in children, and after a while, the headaches went away.  We didn’t notice anything new for months until the day before Isabella was diagnosed when we saw the weakness in her right hand. 

Unfortunately, the symptoms for brain tumors are fairly common and can be caused by many other things.  Since brain tumors are so uncommon, they are rarely diagnosed right away and are seldom the first thing that a doctor will think of.  While we were at Camp Sunshine, we shared many stories with other families who were misdiagnosed for a while before the brain tumor was diagnosed.

The key to brain tumor survival is all in the timing.  If a tumor can be found early enough, there is a higher chance that it can be fully resected before it turns malignant and spreads.  I hope and pray that if you are a parent and you notice any of these symptoms in your child, that it turns out to be something simple.   But in any case, please don’t ignore any of these symptoms should you see them.

Wednesday, September 1, 2010

Back to School

Today, Isabella started second grade and Annalise started fifth grade.  Nathaniel, who just turned three, can’t wait to go to school, as you can tell from the picture below where the kids are waiting for the bus.P1030042

Facts About Pediatric Brain Tumors

As part of Pediatric Cancer Awareness Month, I am posting some sobering facts about pediatric brain tumors.  This information is borrowed from the Pediatric Brain Tumor Foundation, an organization that supports the search for the cause of and cure for childhood brain tumors.  Thank you for taking the time to read this.

  • More than 612,000 people in the U. S. are living with a diagnosis of a primary brain or central nervous system tumor.
  • 28,000 children in the U.S. are living with the diagnosis of a primary brain tumor.
  • Each year 3,750 more children—10 each day—are diagnosed with a pediatric brain tumor in the U.S.
  • 76 percent of children diagnosed with a brain tumor are younger than 15.
  • Brain tumors are the deadliest form of childhood cancer. Brain stem gliomas, atypical teratoid/rhabdoid and glioblastoma multiforme have survival rates of less than 20 percent.
  • Non-malignant/benign brain tumors can kill children if their location in the brain prevents surgical removal or other curative treatments.
  • There are 130 different types of brain tumors, making diagnosis and treatment very difficult.
  • Pediatric brain tumors aren’t like those in adults. Children’s brain tumors require specific research and different treatments.
  • Even though survival rates for some childhood brain tumors have increased over the past 30 years, survivors often suffer from lifelong side effects of treatments such as surgery, radiation and chemotherapy.
  • 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.
  • Research that focuses specifically on pediatric brain tumors is crucial to saving children’s lives and improving survivors’ quality of life.

Tuesday, August 31, 2010

Pediatric Cancer Awareness Month

gold ribbon
September is Pediatric Cancer Awareness Month.  Last year, I missed it.  This year, I almost missed it again, which goes to show how woefully unaware society is when it comes to pediatric cancer.  To help raise awareness, I will be making several posts over the course of the month that will provide some information regarding pediatric cancer (and more specifically, brain cancer).  I don’t know if I’ll have 30 days worth of stuff, but I’ll be able to write something up most of the days.