May is National Brain Tumor Awareness Month.  I regret to admit that, even as my son battled brain cancer this time last year, I was unaware.  In fact, before my son was diagnosed in March 2009, I did not even know anyone who had a brain tumor.  Now I know countless people, some adults but most of them children.  Many of them are struggling with the disease as you read this. Others have already passed. One is in remission.

I receive regular email updates about beautiful 5 year-old Kate McRae via her Internet Carepages website.  I use the Carepages site to stay current on the struggles of adorable 6 year-old Benny Watters and his family and I follow the turns in the treatment of heroic Carly Mitchell from Pennsylvania.  I used to follow the Carepages updates about remarkable Ohio resident, Marissa Norwood, until she, sadly, passed away at the age of 12 last December 19th. I am drawn to these stories after authoring my own Internet updates about my precious son, Joseph, who, like these children, was born healthy but developed a brain tumor. Despite treatment, Joseph died last July 7th only four months after his diagnosis, at the age of two and a half.

This deadly disease gets its funding in gross disproportion to its lethality, and there is minimal public awareness about brain tumors and the lives they forever alter.  Having witnessed brain cancer’s wrath, I hypothesize that the lack of awareness surrounding the disease is because the families of those struck by it are often too devastated and emotionally exhausted to embrace the topic and forge the effort.

While brain tumors are a rare disease by comparison, make no mistake about their impact in our society.  This year, in the United States alone, over 60,000 people will be diagnosed with a brain tumor, and almost 13,000 will die of the disease. Of the 60,000 diagnosed, approximately 4,000 will be children, which amounts to roughly 10 per day.  Most of the children receiving such a diagnosis will be under the age of 15; their lives will be permanently altered and their family’s hopes for the future will be forever changed.

Brain tumors are the deadliest form of childhood cancer. Some forms, such as the type that struck my son, Joseph, have a less than a one-year survival rate. And though 5-year survival rates for less aggressive forms have increased over the past 30 years, children often suffer from lifelong side effects and they can have physical, learning and emotional challenges that substantially limit the quality of their lives if they are even able to live into adulthood.

Among these saddening statistics remains the awful truth that a cure for this disease is far from being discovered, and that the necessary research is grossly under-funded.  Doctors do not know what causes brain tumors and, while they have identified some broad risk factors, the medical community likens the development of most tumors to a game of Russian roulette.

Please take time this month to become familiar with the disease of brain cancer and join our nation in recognizing National Brain Tumor Awareness Month.  Consider donating to a foundation or charity that specifically designates funding to assist in the fight against brain tumors.  Locate your nearest children’s hospital and donate what is needed to help ease the often lengthy hospital stays of their brain tumor patients. Or simply go on-line or talk to your doctor to get more information about the disease.   Your knowledge will allow you to teach your friends and family how to show support and compassion for those individuals and families who have been stricken by a brain tumor.

My family and I still wrestle with moments of pure disbelief that our little Joseph, beautiful as can be, was robbed of his health and a promising future by an inoperable brain stem tumor.  Because brain tumors can strike any family at any time, we, as a society, must all join in this effort to protect our loved ones from the suffering, and death, that they bring.


Author Jennifer Magid Lentz is a lawyer, writer and mother to Joseph Thomas (3/13/07-7/7/09) and Thomas Bryan (3/12/09) Lentz.  She is also President of The Joseph Lentz Fund for Pediatric Brain Cancer Research, P.O. Box #26, Swarthmore, PA 19081, which a 501(c)(3) charity raising funds to find a cure for pediatric brain tumors.