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Guillaume's story

It sounds like a magical, perfect love story. French boy meets Australian girl in a charming Irish pub in beautiful Galway.

They fall in love, settle in Australia, have two children and life is good. Until leukaemia, quietly brewing for some time, issues the young family a daunting challenge.

"I ask you to support the amazing ONJ Centre Nurses who gave so much compassion and care to me when I was sick" - Guillaume

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Guillaume Zigan tells his story in a sunny, warm room in the Wellness Centre with a quiet, lilting French accent, interrupted frequently by his bubbly wife Julia. The two weave their words together, so in tune with each other and the cancer journey they have unwillingly shared.

“Life was going really well, Charlie was 3, Audrey was a baby, we had just been to France,” Guillaume explains. “I had knee surgery after an injury, and post-surgery I wasn’t feeling very well. I got worse and worse and one day I really felt something wasn’t right so I had a blood test.”

Julia knew something was very wrong.

“One morning he turned to give me a kiss, his gum was bleeding, he had a blood spot in his eye, he was white and he had lost so much weight.” 

Guillaume was diagnosed with acute lymphoblastic leukaemia.  Leukaemia is abnormal and uncontrolled growth of immature white blood cells in the bone marrow, which then appear in the blood stream.  These abnormal cells take up space in the bone marrow, which means the marrow can't make enough normal blood cells.

I went into panic mode. It was that moment where your world just stops. Julia Zigan, Guillaume's wife

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Julia remembers the panic she felt when told of Guillaume’s diagnosis.

“I went into panic mode.  It was that moment where your world just stops.”

Because he was so sick, Guillaume was hospitalised that night at the ONJ Centre.

“I was extremely sick. They told me to get me parents out here (from France). My will was written. I had a horrendous migraine that didn’t go away. I couldn’t sleep. I was just curled up in bed.”

Although he started on chemotherapy straight away, Guillaume remained  very unwell and Julia describes the shock she felt one night when he called her from the hospital.

“In the first week, I will never forget it, he called me one night to say that everything was going wrong and he wanted to say goodbye, he hoped I would meet someone else and that he loved me.  I told him not to talk to me like that. I was really yelling at him and saying ‘this is not you’.  Thankfully, after six weeks Guillaume was going really well, the treatment had cleared up all the leukaemia in his blood and he was in remission.”

In the first week, I will never forget it, he called me one night to say that everything was going wrong and he wanted to say goodbye, he hoped I would meet someone else and that he loved me. I told him not to talk to me like that. Julia Zigan

Guillaume came home but soon had to return to the ONJ Centre for a second round of chemotherapy, this time far tougher than the first round.

“At the end of the second round Guillaume called the doctors into his room and said he wanted the treatment to stop. He had terrible inflammation of the gut, he had uncontrollable nausea, he was in despair,” says Julia.  “The doctors told him if he stopped treatment he would die, the cancer would come back.”

It was at this point that the possibility of a bone marrow transplant was raised.  If a compatible donor could be found, it was the only way for Guillaume to have a chance of being cured. The search began, and after six months of searching, a compatible stem cell donor was found in Germany.

The chemotherapy started to show positive results and Guillaume was able to go home on medication that was keeping things stable, for now.

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Time had not stopped for family life – Audrey turned one (‘My first wish when I got sick was to see Audrey turn one,” says Guillaume), then she started to walk, Charlie turned four, then it was Christmas, then Julia’s birthday. And then it was time to prepare for the transplant.

“I had to undergo total body radiation at another hospital to completely wipe out all of my bone marrow cells,” says Guillaume. “Radiation three times a day for one week. I was warned what the treatment would be like but I just did not cope very well. The skin was peeling off my face, it was heavy duty. I was happy to know I was coming back to the ONJ Centre for the transplant.  It was like coming home.”

Guillaume was the seventh patient to receive an allogeneic stem cell transplant at the ONJ Centre after the transplant program was opened in October 2015.

After the transplant, Guillaume remained in hospital in isolation (to keep his environment as sterile as possible), and was finally allowed home around one month later.

However, devastation hit when later that year after the transplant, Guillaume relapsed.

“I knew from the doctor’s face as soon as he opened the file,” says Guillaume. “The doctor said, ‘we need to fight it, we’ve got one more crack at it. We’re going to put everything we’ve got into this.’”

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I'll never forget the day I went in for my bone marrow results. The bone marrow was at zero. I was in remission. Guillaume Zigan

“With this relapse after the transplant it was like finding out he had leukaemia all over again,” says Julia. “But the doctor was amazing, he got the donor to harvest more stem cells which were infused into Guillaume, and while on a trip to the US he organised for Guillaume to participate in an immunotherapy trial.”

“I’ll never forget the day I went in for my bone marrow biopsy results after this new treatment,” says Guillaume. “The bone marrow was at zero, I was in remission. The doctors took me off all medication and I have been in remission ever since.”

“I think we thought I would be fine after the transplant. I think we were a little bit complacent on reflection but now we will never be like that again because we think now that anything can happen. You just have to enjoy the day in front of you.”

What stands out for Julia during this roller coaster journey was the unconditional support of the staff at the ONJ Centre.

“The staff took us in like family, right from the very beginning,” she says. “The nurses would bring in blankets so that Audrey could sit on the floor or they would come and hold her so I could sit with Guillaume. They would heat up her bottles, they would take her nappy away, they got plastic gloves for Charlie to play with to pretend he was a doctor. They just did those little things that made my life so much easier.”

Guillaume adds: “I have always been a soccer fan. One of the doctors, out of his own heart, organised donations from all the staff and they bought me a French soccer jersey. They went above and beyond what we expected. Their dedication was truly amazing.”

The Wellness Centre provided a non-clinical, homely space where Julia could take Charlie and Audrey to play with toys and read stories together.

The staff took us in like family, right from the very beginning. They would heat up Audrey's bottles, they would take her nappy away, they got plastic gloves for Charlie to play with to pretend he was a doctor. Julia Zigan
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“The Wellness Centre has always been a quiet place of calm, like a yoga studio but where you can have a cup of tea, look at the beautiful garden and find harmony even on the most challenging days,” says Julia.  “The kids loved reading a story or sitting quietly with a little snack in there when we would go for a walk whilst Guillaume was resting in the ward. The centre has a beautiful energy and sense of tranquility.  Which is a much needed thing during a time of great challenges and uncertainty. “

But the story does not end there. Life still had more challenges to throw at Guillaume and Julia.

At a routine scan of his lungs (because Guillaume lost 40% of his lung capacity during radiation therapy), an aortic aneurysm was discovered.  After talking to a cardiac surgeon, Guillaume was told the aneurysm could ‘pop’ at any time and he needed urgent open heart surgery. 

Fortunately, the operation went well, and Guillaume and Julia, despite all they had already been through with leukaemia, were full of hope and appreciation.

What we have to remember is I was potentially going to die a few times and was told I was lucky to be alive. Having leukaemia saved my life. If I hadn't had leukaemia, I wouldn't have had the scan of my lungs and the heart problem wouldn't have been detected. Guillaume Zigan

Director of Clinical Haematology, Prof. Andrew Grigg, expresses just how harrowing Guillaume’s journey has been, for all involved.

“Looking after Guillaume has been challenging and, to be honest, at times emotionally draining, with lots of downs between various ups,” he says. “However over the last year there has been an extraordinary turnaround in his life which reflects the strength of his will and the unconditional love of his wife and family. As part of the medical, nursing and allied health team looking after him, the greatest reward we get is seeing patients come out the other side of the tough times and getting back to fulfilling and enjoyable lives. One senses that in these patients each day of their life is appreciated with a depth more than perhaps the average person who hasn’t been so traumatised.”

Prof. Andrew Grigg, Director of Clinical Haematology

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And so what do you do after facing your own mortality, several times? In Julia and Guillaume’s world, well, you help others in the same situation as much as you can.

In his quiet, determined way, Guillaume set himself the challenge of competing in two events at the Australian Transplant Games on the Gold Coast in October – a Triathlon and a Cycling event. He was ecstatic to win gold in his age category in the 30km cycling road race.

“I want to help as many people as possible and try to show those people there is life afterwards,” says Guillaume. “It is not easy. I go to bed every night exhausted. I wake up feeling not well most of the time. Exercising is very difficult – I have lost a lot of condition and I have lost 40% of my lung capacity.  Everything is just a lot harder but it’s about doing it and not complaining about it.”

It’s time for me to give back and support those who battle cancer and to help all the amazing people looking after us at the ONJ Centre.

Continuing their beautiful (but interrupted) love story, Guillaume and Julia were married in March this year surrounded by their family and friends, with Charlie as Best Man and Audrey as Matron of Honour.

Guillaume has set up a fundraising page and will donate all funds raised to the Haematology Department at the ONJ Centre.  At time of printing, he has raised nearly $5,000.
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Guillaume features in our Christmas campaign to support our amazing nurses.

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