Toronto Star, Ontario ed.
Thursday, September 27, 2001

He's her miracle child, beating the odds after doctors said at birth he wouldn't live. Now she draws strength and courage from him as she conquers her own medical problems

Laila Kayum lives by a saying: "God does not place on any soul a burden except to the extent of its ability."

That sentiment, taken from the Qur'an, has carried her through almost unimaginable challenges. She is a recent breast cancer survivor now battling side effects and complications arising from the disease. But her story goes back almost 22 years when her first child was born.

"My son Azeem was born in 1979 with a spinal cord injury, paralyzed from the neck down. He couldn't breathe on his own," she recalls. Doctors didn't expect him to live more than three months.

Kayum and her husband Faizal were shattered. Their child spent the first year and 11 days of his life at The Hospital for Sick Children. But he survived, despite several brushes with death as he grew up. Over the years, he learned to walk and, eventually, breathe on his own. He is now 21 and studying broadcasting at Seneca College.

"Azeem is alive today because we spent every waking hour looking after him. Faizal and I have not slept more than four hours a night for 21 years," says Kayum, speaking with a serenity and calmness that reflects her inner strength.

"He was one of 40 documented patients (with the condition known as Ondine's Curse) so not much was known. That's when I developed the habit of reading and research, learning medical terminology to help me understand and cope with this unknown phenomenon."

Kayum and Faizal, a financial officer with Scotiabank, also gave him speech, occupational and physiotherapy at their Markham home.

"Doctors can't account for Azeem's miraculous recovery," Kayum says. "I'm convinced that he's survived because of the medical care combined with our love."

Now she credits Azeem for giving her the support and encouragement that's helping her overcome her own medical problems.

"My son Azeem says, 'You've preached a positive attitude to me, now it's time for you to practise.'"

There was a price to pay for his recovery, she theorizes. "I know it's the stress that lead to my cancer."

As Azeem grew up, he attended school part-time but was accompanied by a nurse who helped him breathe with a portable suctioning device. In 1999, his condition had normalized to a point where he could breathe through the tubes on his own, and attend school full-time.

"I thought I would start my life, go back to work, but God had other plans for me," says Kayum, who had been a teacher in her native Trinidad. She was thinking about going back to teaching when she found a lump in her breast.

"My initial reaction was shock and denial. But I had to be strong so I went to my doctor. He sent me for a mammogram and said it was clear and there was nothing to worry about. But I had this niggling sense of unease so I went back {ellipsis}"

She insisted on further investigation and a biopsy revealed cancer cells under the lump. In September 1999, Kayum had 11 lymph nodes removed and started radiation.

"I thought this was it- my trials were over. But once again, I planned too soon."

Her doctor prescribed the drug Tamoxifen for five years but, within a few months, she started experiencing severe side effects.

"I lost my sense of taste and was totally disoriented." She stopped taking the drug and the symptoms disappeared.

But then another complication set in: Her right arm started swelling. It was diagnosed as lymphedema, a rare side effect from cancer and radiation. One doctor said it was normal and would subside, another said it could be permanent.

"While I prayed that it would diminish, unfortunately my lymphedema is permanent so I have to wear a compression sleeve all the time."

Although the sleeve severely restricts Kayum's daily chores such as cooking and cleaning, she misses her hobby of balloon decorating, which she did for parties. But she laughs as she looks at a leaflet published by the National Lymphedema Network. "If I follow the dos and don'ts in this leaflet, I may as well not live."

But her medical problems weren't over. At the end of last year, Kayum started experiencing severe dizzy spells, sometimes lasting as long as two weeks.

"At first, doctors said it's vertigo. They did a brain, bone and CAT scan and found nothing in my head, but found another lump in my left breast and I was petrified. I thought this is the end, but it was benign. However, the dizzy spells continued and out came my books."

Last March, doctors finally diagnosed Ménière's disease, caused by lymphatic fluid in the inner ear- another rare side effect of breast cancer.

Now Kayum is on medication for this disease. She also started on medication for acid reflux after having a biopsy of her stomach in May.

"I guess my immune system is weak. This time, the medication caused me to go into severe depression and the scary part is that you don't realize it's happening to you.

The cancer society and a support group "really helped pull me out of my dark days and answered many questions for me," she says. "I think this is all the result of the stresses in my life, which I've learned to deal with, but it's hard."

If the challenges Kayum has faced seem overwhelming, she takes both a pragmatic and philosophical approach to her life.

"Some people have a capacity to bear more than others," she says. "If you're weak, you can give up because you think 'enough.' But the more you bear, the more you learn to cope."

She also draws strength and inspiration from her children. Azeem, who turns 22 in December, "is there to support me when I stumble with a dizzy spell, or need a hand at typing."

Her daughter Lisaan, 19, who's majoring in kinesiology at York University, has been a pillar of strength as well.

"Although Azeem is our miracle child, Lisaan is very special {ellipsis} she has helped us survive. It's been a tough journey for her and she has been exceptionally supportive and helpful."

Kayum also finds strength in her Islamic faith.

"When you bear hardships, you learn and grow. I don't ask why, I ask God how I can cope with my challenges and I thank him for his blessings in giving my son health and life, and an extremely supportive family."

In 1995, Kayum wrote and self-published a book about her son called For a Breath of Life. This was her first opportunity to start talking about her challenges so others would learn.

"I never gave up hope," she says.

Despite tight schedules, she and Faizal have started counselling families who have children with challenging disabilities. And Kayum is gearing up to give motivational talks to other cancer survivors.

She notes her cancer cells didn't show up on the mammogram, so she urges other women who find a lump to pursue it. She also advises being your own health advocate by reading, researching and questioning.

"With the variety of reading and research I've done, I feel like I'm practically a doctor," she says.

Her final message: "Cancer is not a death sentence. You can't let it rule your life. You have to fight it, like me."'Cancer'Lana Slezic/Toronto Star'Cancer is not a death sentence. You can't let it rule your life'

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