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The Battle to Save a Boy’s Sight
Comments () | Published May 1, 2008

Nothing changed Bobby’s school experience more than the portable closed-circuit television that arrived at the start of his senior year. It allowed him to read and write on his own and helped raise his already-high grades. Here, in his US-history class, he uses it to watch teacher Gerard Connolly write on the blackboard.

Lying on a table in a basement room of the Weinberg Building at Johns Hopkins, Bobby experienced a twinge of panic when a hot, pliable, meshlike plastic was applied to his forehead. He thought the skin on his face would be burned. The technicians applied a similar piece to Bobby’s nose and put another in his mouth, on which he bit down hard to make teeth impressions, and then another on the back of his head. The procedure took an hour, and when it was over Judy and her mother were shocked to see Bobby’s beet-red face.

The technicians fused the pieces, which then cooled and hardened to form a mask for Bobby to wear during his radiation treatments. When Bobby put on the mask, his grandmother told him he looked like the Phantom of the Opera.

He began six weeks of radiation treatments on April 9, one month after the second surgery. He timed his arrival at the radiology therapy center in the middle of every weekday afternoon so he’d miss only one of his classes.

In the radiation-therapy room, Bobby lay flat on an adjustable table affixed to the circular radiation-therapy device while technicians hooked the back of his mask to the table. They then placed the front part of the mask on his face and attached it to the back part, locking his head in place. Green beams of light showed the path and angle that the beams of radiation had to traverse to hit the cyst and avoid the healthy parts of Bobby’s brain. Each treatment took 12 to 15 minutes.

Bobby underwent a CT scan every week to make sure the radiation was hitting what it needed to hit. Each time his mother or father took him, he sang to the tune of Harry Belafonte’s “Day-O”: “Now I get the CT scan; / when it over, it’s time to go home.”

Bobby usually arrived early and waited with other patients in an alcove across from the radiation-therapy rooms. Despite the circumstances, the mood in the waiting area was seldom somber, and Bobby did his part to keep things light. When the state-of-the-art radiation-therapy device, which cost around $2 million, quit working one afternoon because of a computer glitch, Bobby said, “Let’s go in there and whack it with a hammer. That usually works.”

Telling his Spanish jokes about aliens and flying monkeys, he soon bonded with fellow patients and their families and began hugging people when he arrived and left each day. Serious illness has a way of stripping away pretense, and Bobby and the other patients—including a smiling teenage girl and two young fathers, all being treated for malignant brain tumors—shared their stories

“There are people facing a lot worse than I am,” Bobby told his mother on the drive home one afternoon. “I don’t feel I have any right to complain.”

The principal of Judy’s school had told her to take all the time off she needed for Bobby, so she drove him most days, but Bob’s boss was equally understanding and Bob did his share of driving. Judy’s parents drove down from Pennsylvania to be there many afternoons.

In the space of two days in the middle of his treatment, Bobby received good news and bad. On April 26, he was inducted into the National Honor Society at school; he had maintained a 3.79 GPA his junior year.

Two days later, as his vision weakened, an MRI revealed that his cyst had increased in size, apparently a result of the initial effects of the radiation. This caused it to press harder on his optic nerve. The oncologist explained that it normally takes months for radiation to eradicate a cyst.


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Posted at 12:00 AM/ET, 05/01/2008 RSS | Print | Permalink | Articles