Every year, an estimated 3,400 children in the United States are diagnosed with a brain tumor or brain cancer. Approximately one third of these children will survive no more than five years, making brain and spinal cord tumors the deadliest of all childhood cancers.
These kinds of tumors are considered to be the toughest childhood cancers to treat successfully due to several factors, including:
- Their precise cause is unknown;
- There are many different kinds of children's brain and spinal cord tumors;
- Because the disease is rare and tissue samples of tumors are small, it takes time to test and validate new treatment options;
- Doctors and researchers are dealing with a growing child's brain and body, so they must first ensure they avoid harming the child; and
- Funds for research and treatment options are limited, due to the relatively low rate of incidence, compared to other childhood cancers and diseases.
Today, across America …
Nine families will learn their child has a brain or spinal cord tumor;
A mother will grieve that her instincts about her child's health were right;
A father will allow himself to cry, but only alone in the shower;
A six-year old child may try to grapple with her mortality.
Three families across America will mourn the loss of their child to 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. At the same time, these same friends, family and community will join to celebrate the joy a child's life brought to them, albeit brief and difficult.
Six families across America will transition to survivorship;
Parents will be grateful for another good MRI;
A mother will be too exhausted from providing constant care to her child to simply write checks to pay bills;
A father will again adapt his day, family and life to a new definition of normal, unlike any he had previously envisioned;
A sibling will wonder whether her parents will ever pay as much attention to her as they do her afflicted sister;
A survivor on the brink of adulthood will wonder if he'll ever date, marry or have a family.
There is hope for these children, as the survival rate has increased significantly over the past twenty years, with approximately 25,000 survivors living in the US today. However, "survivorship" for children with brain or spinal cord tumors isn't as bright as the survivorship that is celebrated with some other cancers. Two-thirds of those afflicted will suffer late effects such as cognitive damage, physical challenges and social isolation. In addition, measures such as unemployment are much more dismal among pediatric brain tumor survivors than among other pediatric cancer survivors.
Families facing this dreadful disease need help. They need resources for education, services, networking, and just plain emotional support. There are several non-profit organizations, such as the Children's Brain Tumor Foundation that offer programs and assistance to these families in a variety of ways.
In addition, these organizations are tireless in their efforts to secure funding in support of ongoing research of the causes, treatment options, and possible cures of these deadly killers. A quick Internet search can offer up a plethora of resources that will fit the needs of almost every family traveling down this very difficult path.
While significant progress has been made in the areas of research, diagnosis and treatment, much more work remains to be done. Awareness is the first giant step in the right direction. From awareness comes education, and from education comes research, donations, and hopefully, someday – a cure.
