Guillaume's story

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.”

“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 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.

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.”