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How the medical system failed Saanich woman Julia Wolf

The medical system failed Julia Wolf. It failed when doctor after doctor dismissed her worries about the growth on her leg, telling her she was much too young to get skin cancer.
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Julia Wolfe, 30, is leaving her Saanich home Monday for a flight to Toronto, where she will be treated with a new drug as part of a clinical trial.

The medical system failed Julia Wolf. It failed when doctor after doctor dismissed her worries about the growth on her leg, telling her she was much too young to get skin cancer.

Now, having been told that she could have just eight weeks to live, the single mother feels it has failed her again, leaving it up to her to fight for the last-chance drug she hopes will buy her more time with her five-year-old son, Lucas.

This is a heartbreakingly sad story.

It began a dozen years ago when a birthmark on Wolf’s ankle became raised and itchy. She went to a walk-in clinic where, alarmingly, she matched her symptoms to the warning signs on a skin-cancer poster on the wall. Don’t worry about it, the doctor told the then-18-year-old Julia. Buy some moisturizer.

Over the years, the bump got bigger, changed colour, but a series of doctors (Wolf couldn’t find a family GP) just shrugged it off as a wart. After Wolf began to feel sick, one physician, figuring she was looking for some time off, told her young people are often allergic to work. “He basically just made fun of me in his office.”

It wasn’t until Wolf was pregnant with Lucas that she was diagnosed with metastatic melanoma.

Now, having defied chemotherapy and a series of drugs, her cancer has spread. It’s in her lungs, her liver, around her kidneys and in her bones, which have become weak. She has two cracked vertebrae. She just got out of Royal Jubilee Hospital, where she spent a week after breaking a rib while trying to sit up in a chair to play Pokemon with Lucas. “It hurts to move. It hurts to breathe.”

Despite the pain, Monday will see the Saanich woman drag her broken body onto a flight to Toronto, where she will be treated with a new immuno-therapy drug, for free, as part of clinical trials.

Ideally, she says, the health system, recognizing that desperate times justify desperate measures, would have provided her with the drug here, even though it’s not yet approved in B.C. That’s not how things work, though. In reality, sick people with the means to do so can go outside the public system, emptying their wallets on unproven treatments; others, like Wolf, are left to scout out free alternatives, competing with other cancer patients for one of the spots in far-off drug trials. “I was really failed by the medical system, and now I have to fight for my own life.”

It’s not as though officialdom is unsympathetic. But the B.C. Cancer Agency says it can’t make drugs available until they’re approved. It does take part in clinical trials, but with hundreds of drugs being tested at once, logistics dictate that not all trials can be conducted here; the study’s sponsor must underwrite costs, the blessing of a research ethics board is needed.

Even when Wolf’s far-off medical costs are covered (she has on occasion been granted coverage on compassionate grounds) other expenses — flights, food, taxis — are often not. That’s on top of the day-to-day stuff: pay parking and child-care during chemo treatments at the cancer agency, say. Wolf’s friends have set-up a fundraising page: www.youcaring.com/medical-fundraiser/saving-julia/166220

Were it not for Lucas, the 30-year-old would have given up, said no more pain. But she clings to the possibility, however faint, that the new drug could push her cancer into submission long enough for some other medical advancement to be found. “Part of me hangs onto this hope that I can beat this and raise him myself.”

Wolf recognizes the gravity of her situation, has explained it to Lucas. “I have to acknowledge that, yes, I am dying.”

She has appointed guardians — her pastor and his wife — in case she doesn’t survive. They have begun integrating Lucas into their home. She trusts them, knows they love him, but the thought is still hard, brings tears. “I can tell his heart is hurting. It has always been just me and Lucas.”

Wolf and her husband split in 2010; he no longer has parental rights.

She finds it maddening to think how differently her life — Lucas’s life — would have been had doctors taken her seriously all those years ago. “Why was it not possible for someone to send me to a dermatologist? Why have those skin cancer posters in their offices if they don’t take them seriously?”

So now she is off to Ontario, in pain, refusing to let go of hope, for Lucas’s sake. Even buying two more weeks with her son would be worth it, she says. “I owe it to him.”