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'What do you do? You give up or you carry on'

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How do you cope when you have buried two tiny sons in four months? Jackie Barreau’s insights into grief and loss give new meaning to the word resilience – and now, a third child faces a battle with cancer

Jackie wipes away the tears  as she explains that her beautiful son, Luke James Barreau, would be turning 18 this month, on August 8. But there won’t be a party. Instead the family will visit Luke’s grave at Centennial Park and think about their dearly missed little boy.

Back in 1996, jaundice was the first sign that something was wrong with the 12-month-old. Jackie’s mother-in-law noticed it first.

“I didn’t think the worst – why would you?” says Jackie.

Initial tests showed an enlarged liver and more tests were ordered. Little Luke, who was just starting to walk, remained bright, playing with his favourite Thomas the Tank Engine toys.

When the senior oncologist at the Women’s and Children’s Hospital came to talk to the family, Jackie and her husband David knew the worst had begun.

“He said: ‘It could be cancer’. They thought it was a tumour but needed to do some more tests.

“I just thought, this can’t be happening. He was such a happy, healthy little baby.”

The diagnosis came back as neuroblastoma – an aggressive malignant childhood cancer. The tumour was as big as a grapefruit and attached to Luke’s adrenal gland.

“I didn’t even know what that was,” Jackie says.  “I was just in shock.

But it’s strange – you just go into autopilot because you’ve got no choice and you’ve got to deal with it. We had hope that everything was going to be okay.”

The family’s life suddenly revolved around Brookman Ward at the hospital and Jackie had to keep working as an assistant in an ophthalmic lab – she worked during the day and slept at the hospital at night.

“I just did it; I didn’t have a choice,” she says. “I couldn’t afford not to.

“My husband was working for Monroe’s at the time and we just had to get through. It was pretty drab. Luke was in a cot and David or I slept in a recliner next to him.”

Their little boy battled bravely but the aggressive rounds of chemotherapy left him exhausted, miserable, with painful mouth ulcers and losing his beautiful blonde hair.

I just held him and cried a lot … what got us through was just hope.

An operation to remove the tumour was successful but the stem-cell transplant and radiation treatment that followed continued to ravage Luke’s tiny body.

“He just slept a lot but he gradually began to pick up. He started eating and things seemed to be going well,” Jackie says.

Almost 12 months after his diagnosis, doctors announced that Luke was in remission. It was around this time that the couple got more good news – Jackie was pregnant.

Luke continued to visit the hospital for regular check-ups and it was during one of these that Jackie mentioned to a nurse that she hadn’t felt the baby move for a while. She was sent for an immediate ultrasound, which showed there was no foetal heartbeat – the baby was dead. Jackie was 26 weeks pregnant.

“The worst part was I had to sit around that hospital because they had to induce me in the maternity ward and I went through the delivery,” she cries.

After a four-hour labour, Jackie gave birth to baby Cody Alan … he was wrapped in a blanket and bonnet and handed to her.

“It was tough,” she says through tears. “I got to hold him for half an hour or so.”

Cody passed away on September 2.

Luke’s smiling face and continual improvement kept the family going. They celebrated his second birthday with a party and things seemed good. For a while.

“I remember we went to the Christmas pageant and he wasn’t looking too flash and was off his food, so we went back to the doctor and did some more tests,” Jackie says.

“They said the cancer had spread. It was just horrible. He’d actually developed a limp and it turns out there was as tumour that had attached to his spine. It had also spread to his lungs so there were no options left to us.

“They basically said: ‘We can give you chemotherapy to get you through the next six weeks over Christmas or you can take him home to die.’ After all that time in hospital, taking him home was the best option for us.”

The family set up palliative care at home. Luke was put on morphine to control the pain but his tiny body began to shut down.

“The first week he actually looked quite good and we were surprised how well he was doing but gradually he stopped eating and he was just drinking and his organs were shutting down. He was just wasting away,” Jackie explains.

“I just held him and cried a lot …what got us through was just hope. Hope that there is light at the end of the tunnel and he might get better.”

But Luke didn’t get better. His tiny body gave up the fight and he passed away on December 20.

“David had gone Christmas shopping. I was home in the family room and had dozed off on sofa,” Jackie says.

When she woke up and rushed in to check on Luke, he had passed away in his sleep.

Jackie and David had lost two sons in three months.

“What do you do,” says the stoic 46-year-old through tears. “You give up or you carry on. That first year was awful. I can’t even remember much about it; you are just numb.

“I remember going to the Woolworths and people would just turn the other way or ignore you because they didn’t know what to say. People who had been to Luke’s funeral. That was hard.”

Today, Jackie has good days and bad days. What has kept her going are the couple’s two daughters: Tayla, now 14, and Mia, 12.

But two years ago, the family was dealt another blow. Tayla had been experiencing a racing heart, anxiety, dizziness and night sweats.

“She woke up one morning and said: ‘I just don’t feel well and I can feel a lump in my stomach.’  She found the tumour herself,” Jackie says.

Tests revealed she had a tumour called a paraganglioma, a type of neuroendocrine tumour.  Test proved that Dad David has a genetic mutation which he’s passed on to both girls.

Yet again, the family’s life was suddenly filled with hospitals, oncologists, medical tests and the cruelness of cancer.

“I was trying not to think of the worst but I was preparing myself for the worst,” says Jackie.

“It’ a very rare cancer – they say one in a million gets it. The oncologist we are seeing hasn’t seen one of these in 20 years.

“The surgeon came in, Chris Kirby, and his wife happens to be an oncologist, Maria Kirby, and she’s the one who gave us the news about Luke being terminal. Then we had Monique, the nurse manager from the emergency department, who happened to have looked after Luke.  I just thought: ‘Oh my god, here we go again’.

Tayla, a Reynella East College student, had the tumours removed and, while they were benign, she has to be closely monitored. Similar tumours have since appeared and been removed from her abdomen. And they’ve just found two more … they will be removed in coming months.

“They’re saying they can become cancerous and spread so we have to keep a close eye on it,” Jackie says.

“The doctor said this cancer has nothing to do with Luke’s cancer. It’s just rotten bloody luck, really.”

So far, Mia has showed no signs of cancer.

Jackie describes herself as a positive person, resilient and strong.

“There’s no point walking around with a chip on your shoulder – that doesn’t get you anywhere,” she says. “But it’s all changed me as a person; I’m probably more compassionate.

“My psychologist gave me some great advice recently and that is to find meaning and purpose in your life. For me, it is writing. I think it has allowed me to ‘let go’ even though Tayla’s diagnosis was tough … one step forwards two steps back.”

Jackie, a commercial cleaner, began writing poetry after the boys died and started writing again when Tayla was diagnosed. She has self-published her poems in a book called Through a Mother’s Eyes – Poems of Love Loss and Moving Forward.

It contains poems like this: “Each day is a struggle as waves of grief wash over me and tears flow and flow…I still yearn to hold you, to kiss and cuddle you, to tell you I love you, and will always protect you, to stroke your face, and smell your hair, to touch your hands and hold you near, for our bond has been severed as mother and son.”

The family also raises money for various cancer organisations, including the palliative-care unit at the Women’s and Children’s.

They recently donated a camera, engraved with Luke’s name, for use by families with terminally ill children, to capture those special memories. It’s called the Heart Felt Camera Kit.

Contemplating everything she and her family has been through, Jackie says her definition of resilience is bouncing back after a life-changing experience.

“I think through my ordeal it has merely highlighted my caring and unprejudiced view of the world, and the actions of others good and bad,” she says.

“I do believe in karma, and life after death.

“Grief is at times hard to navigate – you feel like you have no compass, and you are just bumbling your way through. Over time it does get easier; you learn to cope and the pain of the loss lessens.

“Grief takes time and it is a process of self-healing.”

Genevieve Meegan is a freelance journalist. This article is part of a series she has written for InDaily on the subject of resilience:

Nicole Cornes: I’m stronger than I knew
After they’re gone: living without guilt (ABC journalist Caroline Winter)
Wayne Phillips unmasks cricket’s mental health problem

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