Brain Tumor Awareness Month

BrainTumorAwarenessMonthToday nearly 700,000 people in the United States are living with a primary brain tumor, and more than 69,000 others will be diagnosed this year. Brain tumors are often deadly, impact quality of life, and change everything for patients and their loved ones.

My daughter is currently battling her second brain tumor.  After completing six weeks of radiation followed by a year of Temodar (oral chemotherapy most effective for brain tumors) her MRI showed a new brain tumor developed in addition to the original tumor only being reduced by 50%. She is a warrior and is determined to win the war against this invasion of her body that causes frightening seizures and periods of disorientation with memory loss. She is a very intelligent young woman in her early thirties. It was devastating to see her reduced to an infantile state, not knowing how to do basic daily activities. With excellent care from a neuro-surgeon, naturopathic oncologist, neuro-oncologist, epileptologist, neuro-radiologist, speech therapist, counselor and support groups plus other medical team members, family and numerous friends she was able to regain her memory and speech.

Treatment for the new tumor so far includes an intense radiation called stereotactic radiosurgery, a surgically implanted central venous port for the administration of intravenous chemotherapy, and she receives IV Avastin every two weeks. When she was first diagnosed she had no insurance. After several months she qualified for the PCIP, Pre-existing Condition Insurance Plan . Now she has insurance coverage through her spouse’s employer. Thanks to a multitude of people who have held fundraisers, others who have given monetary and service donations  and frugal habits have prevented my daughter from experience bankruptcy so far. Ongoing labs, diagnostic procedures, medications and treatment continue to accumulate costs such as travel to and from appointments, co-pays, deductibles and multiple items not covered by insurance.

All brain tumor patients face the same challenges. Not all have necessary resources. It is important to  increase public awareness of the need for improved treatment, better quality of life and access to care.

Please consider donating to one of the following brain tumor research, education and / or service organizations during May – Brain Tumor Awareness Month:

American Brain Tumor Association

Children’s Brain Tumor Foundation

National Brain Tumor Society

 

 

May is Brain Tumor Awareness Month

brain_cancer2Brain tumors are the second leading cause of cancer-related deaths in:

  • Children under age 20
  • Males up to age 39
  • Females under age 20

Every day nine families across America learn that their child has a brain or spinal cord tumor and three families will mourn a child they lost to a brain or spinal cord tumor. Brain cancer has a wide variety of symptoms including seizures, sleepiness, confusion, and behavioral changes. The signs and symptoms of a brain tumor vary greatly and depend on the brain tumor’s size, location and rate of growth and age of the patient. General signs and symptoms caused by brain tumors may include:

  • New onset or change in pattern of headaches
  • Headaches that gradually become more frequent and more severe
  • Unexplained nausea or vomiting
  • Vision problems, such as blurred vision, double vision or loss of peripheral vision
  • Gradual loss of sensation or movement in an arm or a leg
  • Difficulty with balance
  • Speech difficulties
  • Confusion in everyday matters
  • Personality or behavior changes
  • Seizures, especially in someone who doesn’t have a history of seizures
  • Hearing problems

Support Organizations: The Brain Tumor Foundation’s focus on early detection with an MRI. (My 31-year-old daughter was recently diagnosed with a 6 cm astrocytoma. The neurosurgeon told us the tumor has been there for years. She didn’t start showing any symptoms until she had some seizures the week before she was admitted to the hospital. The MRI and CT scan revealed her brain tumor was the cause of the seizures.) The National Brain Tumor Society takes issues to capital hill and raised money for research programs. Children’s Brain Tumor Foundation states their mission is to improve treatment and quality of life of those children affected with brain tumors. The Childhood Brain Tumor Foundation create awareness and raise money for pediatric brain tumor research. The Pediatric Brain Tumor Foundation is dedicated to eradicating brain tumors and supporting affected families. National Seizure Disorder Foundation – a large percentage of brain tumor patients experience seizures. This organization can help in that area. Brain Tumor Clinic at National Cancer Institute Information on Brain Tumor Vaccines