Kid Courageous (page 3 of 3)

The Next Step

Aidan prepared by packing up his LEGOs and his Power Rangers videos and putting on a brave face. But, Suzanne admits, "he gets mad and thinks it's unfair, which it is. And he gets terrified." To take his mind off things, she gave him a Power Ranger Megazord, a robot that helps the Power Rangers fight evil. The boy's eyes lit up, but Suzanne's were clouded with concern: "Surgeries stink because you never really know," she says.

A big hurdle, however, was dealing with the tumor itself. Only about one-third of it is visible along the youngster's left shoulder and collarbone. The rest, according to Dr. Abbott, surrounds the spine in his neck and grows into his chest. The doctors didn't want to remove the mass, because it holds the nerves extending to Aidan's left arm, and it is very close to nerves affecting his voice box and major blood vessels. To navigate all that, the team used a computer guidance system. Complete with crosshairs, the device showed them where they were in Aidan's body at critical points in the procedure. "It's a system used for brain tumors, and this was an unusual application. I'd never seen it done for this sort of problem," explains Dr. Abbott.

So on a crisp November morning, the surgeons went to work on their first marathon session. After entering through the front of Aidan's neck, Richard V. Smith, MD, carefully maneuvered around and through the massive tumor using the guidance system. He and Dr. Abbott moved Aidan's vital blood vessels to make a clear path to the spine. Then it was John K. Houten, MD, up next. Using a tiny drill under a microscope, he removed the severely damaged C-shaped part of the spine. David A. Staffenberg, MD, worked through a tiny incision in Aidan's chest to remove small pieces of rib used to bridge the gap left where the bent part was removed and to provide frontal support for the spine.

A week later, there was a second round of surgery. Doctors opened the back of Aidan's neck to fuse more rib segments linking his skull and spinal column. This would provide what Dr. Houten described as a "sort of belt and suspenders" support system for the spine to heal and grow.

Before leaving the hospital, Aidan held his own news conference from a gurney, telling reporters with a maturity beyond his years, "I wouldn't be out here if the doctors hadn't scheduled the surgery. They saved my life. I'm going to go to rehab, get my work done and see my dog, Lulubelle."

Less than two weeks after his second surgery, Aidan could walk tentatively down a hallway holding his mother's hand. The pressure off his spinal column had other immediate benefits: His speech and ability to swallow improved.

Aidan completed most of his rehabilitation therapy at home with regular visits to the doctors monitoring his recovery. In February, doctors removed the halo vest. In March, he went back to school, playing like any other kid, and finished first grade. But there's a long, careful road ahead. "Aidan's definitely not out of the woods in the big picture of his NF1," Dr. Levy says. "Every case is different, and we can't predict what Aidan's tumor will do. But it was a life-and-death situation with his spinal cord, and I'm really comfortable with how that is now."

The next step is deciding what may be needed in the future to keep the tumor from growing. "My real hope is that he won't need any more chemo or treatment for now, and we'll just be able to concentrate on him being a kid," says Dr. Levy.

The Frasers have moved to an apartment in a section of Brooklyn that, Suzanne says, is "closer to Aidan's school and closer to friends." It's a bit cozier; there's no picture-window view of the Brooklyn Bridge -- or the lower Manhattan skyline where the Twin Towers stood. And inside the boxes to be unpacked are many gifts sent to him by those who care, including, from his father's former colleagues, a teddy bear outfitted in a Superman cape with Aidan's name emblazoned on the back.

From Reader's Digest - August 2007

 

• • Generation Y
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