kids

The drawing that made Deborah realise how much her cancer battle impacted her children.

In 2015 Deborah Sims’ three young children faced growing up without their mother.

Deborah had an incurable form of Chronic Lymphocytic Leukaemia and had relapsed after chemotherapy failed. But she didn’t consider death an option.

A chance meeting with a British doctor in the United States got Deborah, who has a British passport but lives in Melbourne, on a clinical trial of an experimental drug at Barts Hospital in London. The catch: She would have to move to the other side of the world for a year with no guarantee of success, as it was a phase one trial.

Speaking to Mamamia, Deborah said buying a one way ticket and kissing goodbye to her children was still the hardest thing she’s ever done.

The drug trial saved her life. She went from being terminally ill and having 81 per cent of her bone marrow filled with cancer to being in remission in three months, and having no detectable disease in seven months. It has stayed that way for three years now.

The effects of Deborah Sims' cancer. Image: Supplied.

Deborah is now back in Melbourne with access to her drug, but for years she was required to travel to London for it. This also meant time away from her children - when she first moved, she didn't see her kids for four weeks.

After their first visit, she wouldn't see them again for nine weeks. The distance was "dreadful".

"I talk to other mums about this because we take for granted, we know we love our children but FaceTiming our children, you can see them but it became the carnal thing. I couldn't smell them, I couldn't touch them... We were all crying every time we FaceTimed, it was dreadful," Deborah told Mamamia.

Eventually, she persuaded her doctors to let her go home to Melbourne, but they told her she could only leave if she returned to London one day a month to attend appointments.

"I came back to Australia but every three and a half weeks I flew back to London. I would fly to Sydney from Melbourne on a Tuesday and I would arrive on London on Wednesday morning, I'd go and do my stuff at the hospital... I'd go back to the airport on Thursday morning and be back in Melbourne on Friday.

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"It was so crazy. I call 2016 the year of jetlag."

Deborah and her children during one of their trips to Europe. Image: Supplied.

All this time meant Deborah missed a lot of milestones with her children. For Cameron, 14, Marlowe, 11 and Natasha, eight, their mum's cancer battle took a toll.

Natasha vividly remembers her mum missing her sixth birthday.

Middle child Marlowe channelled his pain through drawing. When he was nine, Marlowe drew an image he called Shattered Light and shared its very emotional description with his teacher.

Shattered light drawing by Marlowe
Shattered Light. Image: Supplied.
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Marlowe drawing meaning
And its meaning. Image: Supplied.

Marlowe remembers the moment he really understood what was going on with his mum.

"Halfway through the year a foundation came [to school] and they were talking about what cancer was. Mum told me she had cancer but this was the first time I found out what it was... When we left the building I remember just running out and crying because I just realised what could've happened to mum."

For Deborah, seeing this drawing was heart-wrenching. She realised what an impact her illness had had on her children.

"I'd been so wrapped up on the impact on me and how much I'd missed out on, I was worried about them, but to see the pain that Marlowe had been in and obviously his brother and sister had been in was absolutely horrible."

Deborah said her priorities have changed drastically in the last couple of years and she thinks her battle helped her become a better mum. A former self-described workaholic, she now picks the kids up from school daily.

Her children are incredibly strong - and together they all agree that having their mum so far away for a while was worth it, because she's alive.

"I missed so many things, but had I not done it, and they appreciate this now, had I not done it there's a good chance I wouldn't be here at all. It's a very high price to pay but it's worth it," said Deborah.

The whole family was there when she got the call that she had no detectable cancer.

"I was sitting in a pizza restaurant with my children. I got a phone call... It was amazing, I didn't expect to be told I had no cancer and I'm so pleased that the children were with me to celebrate that.

Cameron, her eldest, has advice for other children going through similar situations with their loved ones.

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"Try not to keep it all inside," he said. "Actually talk to other people about it otherwise it just gets worse and worse."

There is a major focus on the patient, of course, with cancer foundations and other organisations, but Deborah said we don't truly realise the extent to which family, friends, loved ones and children are impacted.

"In a way it's almost been easier for me, it was me suffering it but for people to be helpless beside this was really difficult for me to see," she said.

"I do think it's really important to note the impact of cancers on the children."

The family are taking part in the Leukaemia Foundation's Light the Night event this Friday.

Light the Night brings together the whole blood cancer community to walk in solidarity. People living with blood cancer will carry white lanterns, those supporting them will carry blue lanterns, and gold lanterns will be carried in memory of loved ones who have passed.

This year's event is raising funds for breakthrough medical research to help step us closer to a future free of blood cancer.

It is the first time Cameron, Marlowe and Natasha will be involved and the whole family is looking forward to the walk.

"I think it will be an incredibly moving thing to do," said Deborah.

Light the Night, the Leukaemia Foundation's evening lantern walk, will be held in over 140 locations across the country on October 5, 2018. 

You can donate or find out more information here

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