Ian Cameron, baseball cap askew over his
dirty-blond hair, seems like any other toddler while playing with trains
in the living room of his Grand Island home.
But few children at 22 months can match the kind of time Ian has spent
in the hospital.
Few suffer from the rare Congenital Adrenal Hyperplasia Salt Wasting
disease. And fewer still also suffer from neuroblastoma, a rare cancer Ian
was diagnosed with at 10 months of age.
It's been a rough road for Ian, who remains happy-go-lucky despite his
misfortunes. His cognitive development is considered on target.
But thanks to Ian's medical care at Women and Children's Hospital, his
parents, Robert and Dona, say they have reason to be hopeful.
"Children's has been awesome. They have been really great," said
Dona Cameron. "How do you repay a facility for keeping your child
alive?"
Ian's condition was discovered by the newborn screening test, a state
program that tests for genetic disorders. The results became known three
weeks after Ian was born on May 28, 2004, at Sisters Hospital.
Congenital Adrenal Hyperplasia Salt Wasting - which occurs in one out
of 15,000 births - prevents the adrenal glands from adequately responding
to physiological stresses, such as infection or trauma, or maintaining the
body's fluid and electrolyte balance. Since they can't retain sodium,
children like Ian also become dehydrated much faster than healthy kids.
Ian takes oral medication to compensate for what his body cannot
manufacture. Severe stress requires it to be administered intravenously.
Ian's condition requires frequent trips to the hospital, often for
fluid or shots. And he needs constant observation at home, since the
warning signs of a worsening condition - lethargy and paleness, followed
by shock - can easily go unnoticed.
Ian's health problems were compounded at 10 months of age, when a tumor
the size of a lemon was discovered attached to his adrenal glands and
inside his spine. It's believed the stage 3 neuroblastoma had been growing
since birth. Ian was put on chemotheraphy for four months to treat the
tumor and underwent five surgeries. His weakened immune system from the
chemo led him to come down with e coli.
Dr. Lorna Fitzpatrick, a hematologist and oncologist who treats Ian,
said just six to eight cases of neuroblastoma are seen in a given year in
Buffalo.
"Ian's a great kid. He's a trouper. He's gone through so many
things in his little life, and yet every time I see him, he just
smiles," Fitzpatrick said. "He's getting toward that terrible
two stage, but he's just a delight."
Ian's time in Children's was brightened by visits from members of the
Buffalo Bisons, and two visits from Buffalo Sabres great Pat LaFontaine.
Ian is currently cancer-free. While he can kneel and crawl backwards,
the tumor has left him with no sensation from the hips to his knees, and
paralysis from the knees down. Chances are slim the paralysis will go
away.
Robert Cameron said he appreciates funds raised from the Variety Club
Telethon that pay for equipment at the hospital, citing a pump that
delivered chemotherapy medicine to Ian.
The Camerons also are grateful a compounding pharmacy at Children's
makes liquid medicine for Ian that would be unavailable at most
drugstores, and provides home deliveries.
The Camerons are in a local support group, and Dona is the local
contact for the Cares Foundation, which provides education on Congenital
Adrenal Hyperplasia. She's grateful for the sensitivity shown by
Children's nurses and doctors.
"It's easy to feel like a neurotic mother because Ian's disease is
so rare, and they haven't made me feel like that," Cameron said.