28-May-1998 Thursday
Who knows whether Robert Lord will remember all the fuss made of him these
last 10 weeks since a fall from an uprooted tree in his Encinitas back yard
fractured his spine, threatening to paralyze him for life.
There was his father's frantic Internet search for a drug that could help.
There were all the TV cameras and reporters. And all the complicated and
cumbersome medical equipment amid the worried doctors' faces.
But one thing is sure. The shy, freckle-faced lad is one very lucky boy.
Today, after a big party to celebrate his 10th birthday, he will be
discharged from Children's Hospital, perhaps even walking out a bit on his
own with a little help from a walker.
"It's just miraculous," said Robert's neurosurgeon, Dr. Hal Meltzer. "His
spinal cord was damaged to the extent that he had no functional strength in
his arms and legs after the fall. But now, he has an excellent prognosis.
It's not out of the realm of possibility that he can return to normal,
walking, playing sports like soccer -- everything that he could do before."
"It's a miracle," said his mother, Michele Tutoli.
"The most important thing is that he can walk," said his father, Stephen
Lord. "And soon, he will be able to go swimming."
No one knows what did the trick.
Perhaps it was standard medication, given to patients like Robert within
hours after their accidents. Perhaps it was surgery, which Meltzer
performed to hasten healing. Perhaps it was the prayers and support from
hundreds of friends and strangers who heard about Robert's plight from
print and broadcast reports and sent hundreds of cards and gifts that now
clutter his hospital suite.
But it just might have been an experimental drug, GM-1 ganglioside, which
Robert's dad found hours after the accident while searching desperately on
the Internet for help. The drug had shown promise in preventing permanent
paralysis if given within 72 hours of an injury, perhaps by preventing
damage in or stimulating growth of nerve cells.
In a study of 34 patients with injuries similar to Robert's, those given
ganglioside had significantly better improvement than patients given a
placebo. The number of patients was small, however, and much more study is
required for the drug to be proven useful to be approved as standard
therapy.
But even the hint of hope was enough. With help from Meltzer, the U.S. Food
and Drug Administration granted Robert a special "compassionate use"
permission to take the drug. The manufacturer, Fidia Pharmaceuticals,
hurriedly put a month's supply on a plane bound for San Diego, which
arrived within hours of the deadline.
"It would have been hard not to offer all the help we could," Meltzer said.
For Robert's mom, it was the power of positive thinking, and the power of
prayer. "Ask and ye shall receive," she said, adding that she never let it
enter her mind that her son would not recover.
"I always said that no one was ever to let Robert know he might never get
better," she said. "Of course he would get better."
Whatever worked, nearly 11 weeks after the rain-soaked roots of an acacia
tree broke lose while Robert was climbing up a rope ladder, he will be
home. And soon Robert will rejoin his classmates at St. James Academy in
Solana Beach, where he will be an honorary member of the soccer team, at
least until he gets well enough to play.
The computer-game fanatic known as the shy member of the family must be
content to wear a metal "halo," needed to brace his head and neck against
movement that might impair further healing. The halo won't come off for six
weeks.
"I will never forget this halo!" Robert said. "What a pain this is!"
Being at home will take some getting used to, for he hasn't seen that
familiar surrounding since the accident. The doorways must be altered for
Robert's wheelchair, and the family is thinking of ways to help Robert get
up to his room on the second floor, until he improves enough to make it by
himself.
There is a daily ritual of therapy sessions, which he called "a lot of
work," but which will continue at his home, where his five brothers and
sisters eagerly await his return. Every day, Robert seems capable of doing
a little bit more, even walking part of the way to the McDonald's
concession at the other end of Children's Hospital.
And there will be a lot less television, and certainly no cartoons like
Robert has been watching daily on the hospital TV.
But his return home today will be marked by a shower of gifts. There's a
shiny chrome BMX bike from Mike's Bikes in Mission Beach. Shop owner Mike
McInerny set the bike aside for Robert just after hearing about his
accident.
"I remember what it was like when I was 9," McInerny said. "This will be
waiting for him to get well enough to ride."
Robert also will get a phone for his room and a toy radio control car, as
well as some computer games like Red October and Oregon Trail.
Robert is taking it all in stride.
He sat in his room yesterday, on the last full day of his hospital stay,
waiting for the next cartoon show, bewildered by the fuss and trying to eat
his lunch. He said very little to visitors crowding his view of the
television, except to joke that he would always remember his halo.
Every day, he has felt a little bit more power and strength. That shows in
his ever enlarging sense of humor.
"I know why this happened to me," he told his mom sardonically. "It's
because I'm the shy one."