As parents, the ultimate dream we have for our children is that their childhoods will be happy ones, and they will grow up to lead long and healthy lives. Yet, every day, across America, there will be nine families whose dreams will be shattered when they learn that their child has a spinal cord tumor or some form of brain cancer. And, by the end of the year, over 3,000 families will have faced that same moment; when time stood still, the world blurred, and their lives changed forever.
From the moment their child is diagnosed, parents embark on a journey that will challenge every aspect of their being – from intellectual and physical, to mental, emotional and spiritual. It is essential that these parents have a strong support network, with family and friends taking on a vital role in that network. Along with that key component, parents also need a structured system that can provide resources to help them navigate the many challenges they will face, and assist them in making the best possible decisions for their child’s health and well-being.
Once past the initial shock of the diagnosis, parents begin searching for answers to the flood of questions rushing through their minds. Knowledge is power, and early education about this disease can provide a lifeline in these dark waters.
There are several good sources for information on pediatric brain tumors and brain cancer, all of which can provide resources for education, assistance and support–
• Family doctors and pediatricians;
• Children’s hospitals and cancer treatment facilities; and
• Nonprofit organizations focused on pediatric brain cancer.
Here are just a few examples of what a parent might find within the FAQ sections of these organizations:
Q: What are the causes of pediatric brain cancer and spinal cord tumors?
A: There are many different kinds of pediatric brain cancer, and their precise causes are still unknown, although research programs are making advancements towards understanding the causes, as well as improving treatments.
Q: What is the prognosis for most young patients with this disease?
A: Current statistics show that one in three patients will survive no more than five years. However, thanks to the progress that has been made in research over the past twenty years, there has been a significant decline in the overall cancer death rates, and it is estimated that there are 25,000 brain tumor survivors in the U.S. today.
Q: What are the treatment options for a child with a brain tumor or brain cancer?
A: Treatment of brain or spinal cord tumors includes surgery, radiation, and chemotherapy, depending on the type, rate of growth and location of tumors. It usually begins with surgical resection to remove all or part of the tumor. Although complete removal of the tumor (gross total resection) is often the treatment of choice, partial removal of the tumor will occasionally relieve a child’s symptoms.
For parents who find themselves facing this life-altering journey, help is available in many forms, and from several well-respected organizations. Whether the need involves education about this dreadful disease, finding sources for medical or financial assistance, or simply connecting with others in similar situations, the resources are available. Reaching out to one of these organizations can often make the difference in how this journey is traveled-by the parents, and by the patient.
by Joe Fay