Written by Cody Stuart

Zach Winkler’s illness just another hurdle for his resilient mother

photos: Cody Stuart

Zoe Winkler is no stranger to adversity. Like any mother, she’s had to deal with the normal ups and downs that come with raising a sizeable family. With a husband and four grown children, none of whom appear to have any intention of leaving the family home anytime soon, things can get a little hectic. Maintaining a balance between work as a teacher’s assistant, running an increasingly prosperous catering company, while still finding time to manage needs at home has left her little time for the luxury of reflection or relaxation. When describing her, those who know her best tend to use the sort of dynamic language that is normally reserved for those serving in the military.

“I'm always amazed how she is able to pull together a catering job for 100 people and yet still have time to whip up a meal from scratch for her family,” says Zoe's niece and former live-in houseguest Nicolle Stuart. “She's like a force of nature.”

To call her hard working would be an understatement. When she isn’t marking a stack of homework on the kitchen table that serves as the family's command central, she can be found in the kitchen, preparing yet another hearty meal. When her oldest son Josh, now 23, was diagnosed with Tourettes Syndrome two years ago, it was just another obstacle along the way – another crisis to tackle before getting on with the next thing on her lengthy list of daily tasks. All of this, along with the normal aches, pains and broken bones that come with having four rambunctious children, has provided the 51-year-old mother a certain amount of perspective on life.

“I’ve always been a mother, it’s just that the role is now a little more demanding. The house is still standing, the rest of the family is still here, and everybody still wants to be fed.”

Rob Winkler, Zoe's husband of 27 years, still heads off to work every morning at Air Canada, and acts as the family chauffer. Josh, who at 25 is the eldest of the Winkler children, also works at Air Canada as a cargo agent, where his erratic work schedule along with a crowded social calendar leave little time for relaxing at home, other than to eat and sleep. Jessica, who is 21, is a waitress at the Olive Garden. Matthew, 15, is the baby of the bunch, is finishing up his final years of high school and working at a local pet store, which helps finance the riding lessons he has been taking at a nearby equestrian centre.

And then there’s Zach. Zach is 18-years old. Until recently, Zack was your average trouble-making teen – he worked a typical teenage job as a prep cook at a local restaurant, was obsessed with girls, videogames, partying and generally having a good time.

That all changed on April 18, 2008, when he was diagnosed with Ewing's Sarcoma. The rare disease, which occurs most frequently in male teenagers, is a cancerous bone tumour that commonly strikes at the pelvis, thigh and torso. Although the disease has no known cure, treatment for the disease normally involves surgery to remove the tumour; however in Zach’s case the tumour is inoperable because it is located near the base of his spine.

For Zoe, the doctor’s words confirmed a mother's worst fears. “You think that by knowing [that he has cancer] that you’re ready for it, but when you hear the words ‘inoperable cancerous tumour’, it's not something you get over very easily.”

For a month after Zach had fallen while sweeping the floor at work in March, Zoe had thought on that the pain her son was feeling in his lower back was just a pulled muscle, and was no real cause for concern. After all, she had been through similar situations countless times over the years, as the Winkler children have suffered more than their share of mishaps over the years, including a recent incident where Matthew's horse fell on him in a riding accident.

But when Zach was unable to sleep due to growing pain, she began moving ahead under the assumption that he had pinched a nerve in his back. Finally relenting to his mother's wishes that he go see a doctor, Zach went to the emergency room at the Foothills Hospital, where he was told he might have a herniated disc, and was scheduled for an MRI appointment for the following month. The MRI was then shipped off to the Winkler family physician, who told the family that it could possibly be cancer, but more tests would be needed. After Zach eventually lost feeling below his waist later in April, he was taken once again to the emergency room at Foothills, where he underwent a barrage of tests before being diagnosed with cancer in April 2008.

“I’ve always been a mother, it’s just that the role is now a little more demanding.”

Zoe recalls: “When we actually did get the diagnosis of it being inoperable cancer, it was fairly devastating. It was like being kicked in the stomach. But by then it was almost a relief to find out any details, because it seemed like was going to go on forever just even being diagnosed. It was mixed feelings, and I had made up my mind when I knew it was cancer that it wasn’t going to be bad news unless they told me that they couldn’t do anything for him.

“So just in even naming it, at least we felt that it was a move forward and we’d be able to do something about it.”

From his perspective: “It’s been difficult at times to remain positive,” says Zach. “But most of the time it’s been easy due to the support of my family and friends, especially my mom – she's been great.”

Although there is no specific known cause for Ewing's Sarcoma, the disease is associated with periods of rapid growth in the body when, for unknown reasons, the growing cells are more vulnerable to attack. The disease afflicts roughly one teenager in 50,000, and accounts for about 30 percent of the bone cancers found in children and teens in Canada.

Upon hearing the news, the family went through the series of reactions one would expect. In speaking with those afflicted with any form of cancer, feelings of shock, fear, sadness and even anger are the order of the day. But for Zoe, there was another more optimistic feeling that came with the knowledge, and with the knowing that, having discovered just what the problem was, the family could take the next step.

“It was very quick after we heard the final diagnosis as to that they had us in to begin treatment. We found out in the morning, and that very afternoon we spoke to the diagnostic oncologist, and were scheduled to begin treatment the very next day. There wasn’t really a lot of time to think about it, and there was that sense of relief and positivity because at least we were finally doing something and hopefully getting the pain under control and working in the right direction.”

The ability for positive thought exhibited by the matriarch of the Winkler family is something that she appears to have instilled in her children, as for his part, Zach appears to be following in his mother's footsteps when it dealing with his current situation. The matter-of-fact manner in which he discusses his reaction to hearing that he had cancer and to some of its more unpleasant effects is more reminiscent of someone discussing being stuck at home with the flu. It would be easy to mistake such this pragmatic approach to the arrogance of youth, or believe that he is not fully aware of his situation, but in speaking with those in the family, it would appear more likely that this is just his way of expressing the same realistic optimism so apparent in his mother and other members of the family. The Winkler family, it would appear, are not easily fazed.

“It was shocking. I cried. I was sad,” Zach remarks as to his initial reactions to his diagnosis. “Lots of people get cancer though, younger kids than me. I think other people were more shocked than me.”

After being forced to quit his job and pull out of school due to his illness, Zach has made the best out of a bad situation. He has transformed his basement of his family's home in northeast Calgary into a sort of teenage entertainment den, with nearly every imaginable device designed to occupy time within an arm's reach. Behind the makeshift privacy of a cardboard divider, stacks of DVDs, a television, and a makeshift movie theatre – complete with digital projector – provide sufficient audio/visual stimulation. Then there's the XBOX 360, along with a fairly enviable stack of games, most of which have been played to the point of boredom. A well-used cell phone is rarely out of reach. More recently though, Zach has turned his attention to more a traditional form of sedentary entertainment – LEGO. At those times when he isn't playing host to the groups of friends that frequently stop by, you can normally find him hard at work attempting to piece together the latest Lego set given to him by a family member or well-wisher.

Despite being stuck at home, and not taking part in the normal male rituals associated with turning 18, Zach has still been able to find the positives in his current situation.

“The first major change was not going out. I used to go out lots, but now I’m always at home, which is kind of a good thing I guess. Plus I quit smoking, so that’s another good change. I found out right before I turned 18, so giving up my eighteenth birthday was hard, but I guess I ended up saving money, so that’s another good thing.”

Despite all of the support that the family received in the days following Zach's diagnosis, Zoe says that there were a few in the family, mostly those of the older generation, that viewed the diagnosis as nothing less than a death-sentence, to which they reacted with the sort of grim pessimism that comes with not fully understanding the treatments that have resulted in a dramatic increase in cancer survival rates over the last 20 years. Canada recently ranked amongst the top nations in the world when it came to the five-year survival rate, which currently sits at 82.5 percent. In Zach's case, the five-year survival rate amongst those afflicted with the form of non-metastasized Ewing's Sarcoma tumor ranges between 60 to 80 percent, depending on the size of tumor and operability.

A recent report released by the Alberta Cancer Board projects that one out of every two Albertans will develop cancer in their lifetimes, and that one in four will eventually die of it. Such sobering statistics would be a lot for anyone to take in, let alone a mother looking out for one of her children. And when they are combined with the endless barrage of technical jargon and medical terminology that doctors are so well known for, it could make for a situation that threatens to crush even the most optimistic parents. Luckily, says Zoe Winkler, those at the Tom Baker Cancer Centre have been more than understanding during Zach's treatment process, which involves intense radiation and chemotherapy sessions to try and reduce the tumour.

“I think that the professionals and all the doctors have been fairly straight forward with us, they are always telling you which drug does what and what they’re doing. At first there’s so much information that it’s just mind-boggling. And also there’s a lot of questions that I don’t want answered, so I don’t ask them. Anything I have asked, I get fairly straight forward answers to.”

In striking at teens, the age group normally associated with the invincibility, freedom and even irresponsibility of youth, Ewing's Sarcoma could be considered an especially cruel form of cancer. When most of his age are just starting to take advantage of the new-found independence and advantages that come with being of legal age, Zach has been largely confined to the family basement, as fatigue from radiation and chemotherapy, and the fact that his tumour has cut off much of the feeling below his waist, have severely limited his ability to get up and walk around.

“It’s an understatement to say it’s been especially hard for someone of Zach’s age - I mean the kid had his first chemo treatment on his 18 th birthday,” says Zoe. “I just think that with his situation and the stuff that he’s been through that it’s been especially difficult. I don’t think it would be easy for anyone of any age to go through this, but I think that an older and more mature person is maybe better able to deal with some of the physical things.”

Zach's illness has required the already industrious mother to contribute a near-Herculean effort in order ensure that that her son has what he needs to be comfortable, continue her work as a teacher's assistant, and keep the Winkler family home functioning in the manner that everyone has become accustomed to. Despite her added obligations, which include almost daily trips to the hospital, she still finds time to play host to the many friends and extended family that seem to inevitable appear come dinner time.

Husband Rob sums up the importance of his wife to the family in one simple statement.

“Without Zoe in the family right now, we could not possibly survive.”

Taking it upon herself to keep things as normal as possible, the end result of all this extra effort on Zoe's part has resulted in life basically going on unchanged for everyone else in the Winkler household. Everyone has their own responsibilities and social lives that must be tended to, and one hardly gets the feeling that anyone is dwelling on the fact that a member of the family is seriously ill.

Daughter Jessica sums up the roles played by the respective members of the Winkler family.

“My dad’s the chauffeur and my mom is the main caregiver, and then Matthew and Josh basically just bring him food and are his servants.”

Zach's mother is quick to dispel any notions that, because of her son's illness, she has forgotten his faults and the person he was before his diagnosis. Although she may have forgiven many his teenage blunders – such as his dalliances with illegal substances and his penchant for not taking his academic career seriously – she hasn't forgotten his faults.

“Zach was independent. He has just gotten his driver’s license, he was getting pretty close to his eighteenth birthday. He was just never here, which suited me fine because when he was here he usually drove me crazy, because he’s loud and obnoxious and in your face – he’s always been like that.”

This surprisingly candid assessment is not solely confined to the habits and demeanor of her son before his diagnosis. Zoe's motherly motivational skills have not diminished in the time since Zach has been diagnosed, nor is she willing to give him a free pass on his road to recovery.

“I guess what I’ve found annoying is his lack of wanting to try – wanting to push himself (with physical activity) – at least how I see things. He’ll say stuff like ‘it doesn’t really hurt, it just feels weird’ and I just think ‘Well, suck it up’.”

However, times have recently become a little easier for the Winkler clan, as Zach has been responding well to the treatments, and there are signs that his tumor appears to be shrinking on in its own, and he has even been able to occasionally venture out of the house on his own. In the six months since being diagnosed, he has already undergone multiple sessions of chemotherapy along with radiation treatments. Zach still has a long way to go before he can return to his regular life, as he still requires at least another year of treatment, with the possibility still looming that things could get worse before they get better. Zach has come to accept the sedentary routine that his treatments force upon him.

“Right now I'm feeling better so I can get up and walk around a little, but normally I lay in bed at home, and I only go out when I go to the hospital.”

For Zoe, this means that the uncertainty and doubt that come with not knowing the eventual outcome of her son’s illness will likely continue for some time.

“Ninety percent of the time it’s easy to stay focused on positive thoughts. Sometimes if Zach has a rough day, it’s a little bit tougher – thinking that it took so long to see any improvement even when the doctors said there was improvement, we couldn’t see it and he couldn’t feel it, so that was tough. Now that things are getting better and he’s improving, it’s even easier to remain positive.”

For now, this has provided Zoe with a slightly higher level of freedom in recent days, as Zach no longer requires the round-the-clock care that he did in the early days.  However this does not mean that rest and relaxation will now be the norm.  Since Zach has improved, Zoe has gone back to her regular school schedule, and has been able to take more orders for her catering business.

As for any sagely advice for those who find themselves in a similar situation, Zoe recommends that they do not rely on any otherworldly guidance when looking for a cause, and that they simply keep moving forward.

“ Positive thinking. Don’t wallow in self-pity. Don’t waste time going ‘why me?’ and why is God doing this to me, and wondering what you did to deserve this, because there isn’t a spiritual answer to that question.”