Countdown to a hard-earned cure

BY JANE CANAWAY
10 Mar, 2009 12:00 AM
SINCE her latest life-saving operation, Patty Carlyon counts her life in days.
When you have been told you are going to die as often as she has, every day is a blessing.

Last Wednesday, it had been 168 days since a bone marrow transplant operation – just one of too-many major operations Patty, 11, has endured since being diagnosed with acute myeloid leukaemia in November 2005.

Everyone’s hopes were raised when Patty went into remission in mid-2006. Then, last July, her life came crashing down when the leukaemia reappeared. Determined to make the best of the bad news, her family held a huge party and sent her off to hospital in a limousine.

“I’m really well now and, if my next tests are good, I’ll be able to go off boiled water. I’m already off the ‘clean’ diet,” she said, referring to a food regime she had been on for months.

Her diet had been limited to food prepared within half an hour and boiled water to reduce the risk of food poisoning or bacteria while her immune system was low.

Of the past 168 days, about 100 were spent in hospital, so Patty was more than happy to come home in time for Christmas. She still has fortnightly blood transfusions and goes back to hospital for regular tests, adding to the strain on her parents, Kim and Ron, and family.

Sibling Elizabeth, 8, sometimes gets fed up with the extra attention Patty receives. Yet it was Elizabeth whose bone marrow was the perfect match for Patty – and she bravely endured the pain and discomfort of donating it.

“They took out a litre of bone marrow; she’s so skinny it’s hard to imagine there was a litre in her,” Ron said. “But she was so brave – she didn’t complain at all. She really wanted to do it for Patty, but they fight like cat-and-dog the rest of the time.”

Patty is proud to have played a role in improved treatment of children with leukaemia. Because she suffered massive secondary infections from cold sores when her immune system was destroyed by chemotherapy, patients are now treated for cold sores and urinary tract infections before problems set in. A heart echo test – colloquially called the ‘Patty test’ – is also given after chemotherapy to prevent the massive heart damage that nearly claimed her life three years ago. “She is the first [patient] to show that the heart can heal with the aid of a pacemaker,” Ron said.

“And I was out of the transplant [recovery] room in just 13 days,” Patty said. “That’s a new record.”

Not that it was all plain sailing. She contracted a virus and again got a cold sore infection, which spread straight to her kidney, liver and lungs, and almost killed her.

She pulled through to keep hold of two other ‘records’: the longest time spent in intensive care (eight months) and the only child to be treated on all eight floor levels at the Royal Children’s Hospital.

Patty has spent more time in hospital than at Sunbury Primary School in the past four years. She can rattle off medical terms with ease and has a mature approach to life.

Getting well still takes priority over schoolwork but she has a clear goal in mind – she wants to be a nurse. “It’s something I’ve always wanted to do, even before I got sick.”

For now she keeps counting the days: in 572 days, doctors can be sure her transplant is fully successful. In 1657 days, she will be officially cured.

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Article by Jane Canaway

British-born, schooled in Holland and Wales, I worked my journalism cadetship in the Home Counties, escaped to London, then spent a couple of years travelling before settling in Melbourne, where I have written and edited for a range of publications, including Pacific Magazines [Your Garden, Home Beautiful, New Idea] and Fairfax Community Newspapers. Now a mother of two wonderful teenagers, I write about gardening, sustainability and people, when I can drag myself away from the vegie patch and my saxophone.
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