For Anisa, it's about pizza, not treatment

April 30, 2009

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Jennifer Brown

SPECIAL TO THE STAR

KIDS HELPING KIDS BUST FEAR OF IV

For the young patients in 4C at SickKids, Cody Gascho is a kind of super hero.

As captain of the IV Busters, his picture is on the bulletin board, along with a story explaining how often and how long he's been coming to the hospital.

Once a month for 17 years, he has made the 90-minute drive to Toronto from Stayner (near Collingwood) for an intravenous infusion of white blood cells to treat his low immune system.

"I've been coming to SickKids since I was a baby," he says. "I used to get the IV in my hand, but now I get it in my arm."

Gascho talks with other, less-experienced patients, and encourages them to be brave. "I tell them you can have a parent with you or, if it hurts, it's okay to say `ouch' or to cry."

The idea behind the program is to give kids some control over what's happening to them, explains nurse Stacy Denford. "It's one thing for nurses and parents to tell kids they can get through it, but when they hear it from their peers or other people who have actually gone through it, it makes that much more of a difference."

Launched by a group of nurses in 1991, the program is run by children to help other children cope with the often-daunting experience of getting an IV started.

"It's something they are often quite fearful of, so it encourages them to hold still and that it's okay to cry, but there are other things you can do to get through it, like taking a deep breath," explains Andrea Hoover, a child life specialist at the hospital.

Kids in the program collect stickers on a card attached to lanyards that they wear. After five successful IV starts, they are welcomed into the IV Busters Club. After every 10 starts, they get to choose an item from a treasure box.

"It's something for them to look forward to wearing and they can share a connection with each other that way," says Hoover.

– Jennifer Brown

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Every Tuesday, Jennifer Elder gently wakes her daughter Anisa at 4:30 a.m. and gets her ready for the two-hour drive from their home in Peterborough to SickKids hospital.

"Coming here is routine for her now," says Elder of their trips to Toronto for Anisa's enzyme replacement therapy (ERT). "For her, it's about the people, the pizza and the treatment – in that order."

As she watches Dora Saves the Snow Princess on TV, the happy and confident 3-year-old with red hair and glasses seems oblivious to the IV drip going into her chest. She nibbles on pizza and moves around the hospital bed in blue jeans embroidered with flowers and a pair of stylish little sheepskin boots. Periodically, she breaks into song while playing with a pink stuffed bear. (Watch of photo gallery of Anisa's day.)

If all goes well, the treatment will finish at 3 p.m. and Anisa and her mom will be in Peterborough by 6.

"Keeping her entertained is the biggest challenge," says Elder. "We watch a lot of movies here."

Anisa has mucopolysaccharide storage disorder (MPS-1), which causes a build-up of complex carbohydrates in the lysosomes of cells. It's a progressive disease that affects virtually all of the child's organs and skeletal development. There is no cure, and life expectancy is just 10 to 20 years.

The ERT is medicine delivered through a subcutaneous port in Anisa's chest to delay the progress of the disease and prolong her life.

Elder and her husband, David, both 30, have had to adjust their work schedules around Anisa's treatments, which she must continue for the rest of her life.

The time off eventually cost David his job at a local car dealership. Now that Anisa is older, Jennifer makes the trip alone most weeks, since her employer has been more flexible. An operations manager for a call centre in Peterborough, she has juggled her hours and even conducted work from Anisa's bedside.

"It's not easy to have someone else take over at work. I have done conference calls from SickKids before while Anisa is having treatment," she says.

For the most part, Anisa is a normal child. Her favourite food is cereal, she takes swimming lessons, goes to daycare and looks forward to her first day of school.

She is short and has other medical issues that require checkups at SickKids. She has corneal clouding on her eyes and heart problems that require monitoring. She also has sleep apnea.

Elder feels it was fortunate Anisa was diagnosed just two days after her first birthday; most children with MPS aren't diagnosed until 5 or 6. That early diagnosis was thanks to Dr. Unni Narayanan, a SickKids orthopedic surgeon treating Anisa's club feet. He recommended she be tested for a metabolic disorder after a radiologist noticed her hip X-rays showed very little bone growth and that her pelvis was an unusual shape.

"It was a very astute radiologist who saw her X-rays and suggested they were off and referred her case to a geneticist to rule out MPS-1," recalls Elder. "If we hadn't been to SickKids for the orthopedic clinic she would never have been diagnosed."

The family was referred to Dr. Joe Clarke and his genetics team, who diagnosed Anisa with an intermediate form of MPS-1, called Hurler-Scheie. "On a sliding scale of MPS-1, she's in the middle," says Elder.

Despite the prognosis, Elder remains positive. "As long as she is happy, I'm happy. It's about treating the child, not the disease."

See a photo gallery of Anisa.

Peruse the SickKids special section.

Toronto Star