HOW MANY OF YOU HEARD ABOUT THE TUMOR NAMED “FRANKENSTEIN”? This is a story which made national news in mid-January and again in early February.
The story line is simple. A nine-year old boy in Richmond, Virginia was diagnosed in May 2003 with embryonal rhabdomyosarcoma. A grapefruit-sized tumor was impinging on his optic nerves and carotid arteries, causing blindness and headaches. The boy named his tumor “Frankenstein,” or Frank for short. Chemotherapy and radiation treatments shrank it to the size of a peach pit, restoring his vision, but there were serious side-effects. For a while he couldn’t walk or eat and had to be fed through a tube, according to his mother.
Following chemotherapy, the problem was that the boy’s parents did not have the money required to pay for the biopsy necessary to determine if the remaining tissue in the tumor was malignant. To raise money to pay for the biopsy procedure, his parents had been auctioning, on E-Bay, a bumper sticker reading “Frank Must Die.” That’s how the story came to the attention of the national media.
Learning of the boy’s plight, Hrayr Shahinian, M.D. of the Skull Base Institute at Cedars-Sinai Medical Center in Los Angeles, California offered to perform the procedure at no charge. Using a minimally-invasive technique, the biopsy was conducted on February 2. The surgery was declared a success and the tissue was sent off for analysis.
As of press time, the family had not received the pathology report. They have scheduled a press conference for tomorrow, February 15, to announce the results. The press conference will be conducted at the Willard International Hotel in Washington, D.C. and Dr. Shahinian will be present to discuss the findings.
Certainly there are many heartwarming aspects to this story, particularly if David, the young boy, gets a pathology report which indicates he is cancer-free at this time. On the other hand, this story exposes gaps in how the American healthcare system responds to the needs of individuals who lack adequate financial resources. This tale also draws attention to the time required after the biopsy procedure before test results and the pathology diagnosis can be provided to the patient, his physician, and his parents.