Stephen's Story, Part 2: So, wait, what happened?

In December of 1994, my eleven year old brother, Stephen, had a sudden onset of double vision.   A trip to the optometrist revealed a brain tumor.

After the initial tumor sighting, life went into an incredible, dizzying spin.  The closest major children's cancer center to my hometown of Elmira, NY was the Geisinger Medical Center in Danville, PA.  We took Stephen there immediately for a full diagnosis.

His tumor was a brain stem glioma.  It was located at the pons, between the medulla (at the top of the spine) and the midbrain (behind the pituitary gland).

Stephen's oncologist, Dr. Shah, estimated the tumor to be the size of a lime.

Tumors of this size, in this location, have a very poor prognosis.  They are obviously inoperable, as they are surrounded by the nerve fibers that connect the brain to the rest of the body.  The likelihood of muscular paralysis aside, this part of the brain controls the most basic life-sustaining reflexes, including breathing and swallowing.

Treatments are still quite experimental.  These tumors are very aggressive, and survival rarely exceeds 12 months.  Even when the tumors respond to radiation and chemotherapy, survival beyond 20 months is exceedingly rare.

Stephen knew the basics of his disease, but did not know all of these details.  He didn't need to know, and didn't care to know.  All he knew is that he was going to have to fight cancer, beat cancer, and keep his hope alive.  And fight is what he did.   

For more information about this particular type of pediatric brain cancer, St. Jude Children's Research Hospital has a very straightforward, clear, and concise article.  You can find it here:





Click here to read the other installments of Stephen's Story:
Stephen's Story, Part 1: A Flashback

Stephen's Story, Part 3: Chemo for Christmas
Stephen's Story, Part 4: There goes the hair
Stephen's Story, Part 5: Radiation and Ronald
Stephen's Story, Part 6: A Happy Birthday
Stephen's Story, Part 7: Great Danes and paper cranes
Stephen's Story, Part 8: Promises
Stephen's Story, Part 9: The Long Journey
Stephen's Story, Part 10: Requiem


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