If you’re a regular around here, you already know that my daughter, Bethany was diagnosed with a brain tumor when she was two years old. Her type of tumor was a juvenile pilocytic astrocytoma.
Approximately 14 out of every one million children under the age of 15 have been or will at some point be diagnosed with a JPA.
In technical terms, a JPA develops from astrocytes (star shaped cells) and are classified as gliomas or tumors that develop from glial tissue. Astrocytes are cells that form tissue around and protect other nerve cells within the brain and spinal cord.
Our Personal Experience With a Juvenile Pilocytic Astrocytoma
Bethany’s very large (7 cm. roughly the size of a baseball) tumor was confined to the left posterior fossa in her cerebellum. Therefore her symptoms were head ache, vomiting, and loss of balance.
She may have also experienced vision problems, but because she wasn’t yet talking when diagnosed, it is uncertain if she experienced any changes in her vision.
Due to its size and location, Bethany’s tumor was literally killing her. Because of that, her doctors referred to it as a non-malignant cancer.
For more details about our experience with Bethany’s brain tumor please click on Bethany’s Brain Tumor Diagnosis!
- The most common symptom associated with a JPA is increased pressure within the brain, or hydrocephalus. The tumor causes a blockage in the flow of cerebral spinal fluid, thus causing a build up of this fluid in the brain.
- Other symptoms commonly associated with this increased pressure on the brain include headaches, lethargy or drowsiness, vomiting changes in personality or mental status.
- Sometimes a JPA may cause seizures, vision problems such as blurred vision or double vision, gradual changes in behavior or mood, and weakness of the arms and legs.
- JPA’s in the brain stem and cerebellum cause symptoms such as nausea, vomiting, impaired coordination and sometimes paralysis.
- A JPA in the optic nerve pathways may cause a loss of vision, degeneration of the optic nerve, papilledema, nystagmus, and protrusion of the eyeball.
- A JPA in the hypothalamic region could cause weight gain or loss, premature puberty or diencephalic syndrome, which is characterized by failure to thrive, abnormal thinness, irritability, and eye abnormalities.
The exact cause of Juvenile Pilocytic Astrocytomas is unclear, but based on current research, it is speculated that all of the following may play contributing roles in causing specific types of cancer.
- genetic and immunologic abnormalities
- environmental factors (e.g., exposure to ultraviolet rays, certain chemicals, ionizing radiation)
Treatment and Prognosis
The main course of treatment for a JPA is surgical removal. Total and complete removal of the tumor is usually a cure. The cure rate is 90-95%.
Juvenile Pilocytic Astrocytomas must be removed because, although they are benign tumors they are life threatening and are fatal if not.
If complete removal of the tumor is not possible, some doctors recommend radiation or chemotherapy. However, the use of radiation is controversial. In fact, when Bethany was diagnosed we were told that radiation usually caused new JPA’s to form.
We were very blessed that the complete removal of Bethany’s tumor was her cure. She has been 100% cancer free for fifteen years now!
However, the brain damage she acquired during the surgery to remove the tumor has changed Bethany’s life drastically. She now battles multiple permanent disabilities including a debilitating seizure disorder, autistic like behaviors, partial blindness, left side weakness, learning disabilities, sensory processing difficulties, OCD and occasional aggressive behavior.
Some of the information for this post was found at National Organization for Rare Disorders
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