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Alex Barnes plays with his sister Felicity after being released after his first day of Proton Therapy at Shands Jacksonville on October 21, 2008.
Convinced that it his was his best shot at survival, Alex Barnes’ parents rushed the 4-year-old last fall from their home in England to Jacksonville for six weeks of proton therapy.
The results were two-fold: Alex’s aggressive brain cancer all but vanished, and impressed British health officials have begun taking steps to establish the country’s first proton therapy center.
England's National Health Service last week announced that it is accepting bids from hospitals to host proton therapy services. In a statement to the media, the head of the agency credited the initiative to the lobbying efforts of Alex’s mother, Rosalie.
"Her campaign to bring proton therapy services to England so that other children and adults can benefit from having the treatment here impressed me greatly,” said Health Minister Ann Keen, who had a one-on-one meeting with Rosalie last April.
Britain has a proton beam, but it is only strong enough to treat eye cancer. Health officials say the new device likely won’t receive funding until 2011 at the earliest.
They aren't cheap -- the University of Florida's Proton Therapy Institute, which debuted next door to Shands Jacksonville in 2006, cost $116 million. The hefty price tag has limited the number of devices in the United States to six and worldwide to about two dozen. Four new U.S. centers are under construction. UPENN's center opens for patients this November.
Supporters say the key difference between proton therapy and conventional radiation, which uses X-rays, is the amount of healthy tissue it preserves around its target. Protons only destroy tissue at the tumor site whereas traditional radiation destroys everything in its path and beyond, leading to potential complications, they say.
For Alex, precision was crucial. Doctors worried that X-ray radiation would damage the boy’s hippocampus, the brain’s learning center, and his hypothalamus, which controls body function. That would have put him at risk for developing diabetes, cardiovascular problems and other complications.
Although the British government offers to pay for overseas proton treatments, the Barnes family skipped that process, fearing that Alex would die before his claim could be processed. As it stood, doctors only gave him 25 - 40 percent chance of survival.
Local news coverage of the boy's plight helped the family raise thousands of pounds for Alex's treatment in America. Last September, the boy and his mother flex from their hometown of Fleckney to Jacksonville, where, as it happened, Rosalie went to high school and her parents still lived.
The boy, now 5, underwent surgery at Wolfson Children’s Hospital to remove a quarter-inch-long tumor in his brain. After a few weeks of healing, he crossed the St. Johns River for 33 proton therapy treatments.
In the e-mailed words of his mother, “Alex went straight back to school as soon as we returned home and he hasn’t missed a day since. His eyesight is perfect ... and his hearing is sharp, too.”
Coverage of Alex's story in the British press, coupled with Rosalie’s lobbying campaign, persuaded a contingent of British officials to visit the UF institute earlier this summer. The group spent most of their time quizzing the administrators about how they overcame the logistical hurdles to build the center, said Stuart Klein, the institute’s executive director.
The visit also led to a new partnership. Recently, British officials said they have selected Jacksonville as one of three sites worldwide where they will send proton therapy patients until their device is ready.
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