The fight for life

July 22, 2015 by Henry Benjamin
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Michelle Haber is a scientist. David Ziegler is a paediatric oncologist. This superbright pair is at the frontline of the fight to find a cure for currently incurable strains of cancer which claim the lives of three Australian children every week.

Together they fight the enemy in the test tube and the enemy in the wards.

Michelle Haber and David Ziegler   Photo: Henry Benjamin

Michelle Haber and David Ziegler Photo: Henry Benjamin

In 2004, David was still in training to become a paediatric oncologist but had already developed the desire to “get into the lab to learn how to use pipettes and test tubes”. He travelled to Boston to study at the Dana-Farber Cancer Institute at Harvard University. His two years in Boston contributed to the PhD he was to achieve back in Sydney under Michelle’s supervision. Now a full-time specialist “looking after kids with cancer and blood disorders” Ziegler told J-Wire: “Although that takes up 100% of my time I have to find another 100% working here in the lab studying brain tumours in kids.”

Michelle Haber started her professional career in clinical psychology. At the time, Michelle did not choose to study medicine even though she had “points to burn” believing that a domestic scenario was in store for her. Nevertheless, she found herself drawn to studying and research and gained a PhD in animal learning. Michelle said: “I found myself wanting to work in an area where I could see tangible outcomes and in which I could make a difference.” Michelle switched to medicine with her long-term goal being research and studied pathology and biochemistry.

Having embarked on Her PhD, Michelle Haber turned her focus on what was to be the subject of her research…cancer.

At work in the lab

At work in the lab

She was in Israel when she received a telegram from her PhD supervisor inviting her to join his team at the newly announced Children’s  Leukaemia and Cancer Research unit in Sydney. The realisation for Michelle Haber that she was going to become a research scientist at the first children’s cancer research unit in Australia was a dream come true. She told J-Wire: “It was amazing. I was at the right place at the right time.”

Although hospitals throughout the country have units which work in the area of children’s cancer research, Sydney’s Children’s Cancer Research Institute remains the only fully dedicated unit in the country.

Collaboration is world-wide including Israel. Michelle Haber said that the clinical trials being performed in Sydney were “at the world’s forefront”.  She added: “There is a finite number of people working in this area and the only way to make advances is by working within an international community. Thirty years ago, there was handful of us and now we have our international parters.”

Georgia - survived cancer

Georgia – survived cancer

The Children’s Cancer Research Institute is a fusion of the medical and scientific worlds but Michelle Haber admits to having visited the wards in the nearby Sydney Children’s Hospital  housing patients whose lives she is dedicated to saving only a few tines. She told J-Wire: “The wards are not my world. The only we can work is by bringing men like David into our world so that we can work as a completely integrated team.”

David Ziegler said that seeing how the science can translate into finding ways to help his young patients “has always been one of the strengths and that is something we have built on. We give new drugs and developments to kids for whom standard therapy hasn’t worked. In Boston, when a child relapsed or didn’t respond to standard treatment we were able to use experimental drugs…something we couldn’t do here.”

The paediatric oncologist based at the Sydney Children’s Hospital in Randwick said that the Institute would hold meetings involving clinicians, doctors, nurses and pharmacists together with scientists. He said: We would ask them what they working on in the lab and what steps can be taken to bring this latest research to the clinic.”

Sienna  Died aged 2 1/2

Sienna Died aged 2 1/2

Ziegler explained that the reverse process would often come in to play when problems in the clinics would present a challenge to those working in the labs. “We were not just writing papers or getting grants,” he added.

Scientist Michelle Haber said that there was a territorial line between her team and the clinicians.

“What we do will allow the doctors to make a difference and we do this is as a partnership. We are two parts of a whole. Our common goal is to make the children better and from stopping this dreadful disease from taking its toll. We have one common goal and that is to make the child better and to stop this dreadful disease from taking the children.”

Michelle Haber said her staff is motivated by frequent visits to the lab by the parents of cancer victims who tell their stories and often bring their child with them. Everyone attends from top scientists to storemen and other members of the support staff so that everyone knows what they are working towards a 100% cure rate. She added: The lab is my domain. My

Emily - survived cancer

Emily – survived cancer

territory stops at anything to do with the care of the children. We are here to do the research and to advocate for funding and bringing the families into our world.”

Although Haber is an infrequent visitor to the wards, she regularly meets with the parents of children fighting cancer. She told J-Wire: “The day I listen to the parents’ stories and I’m not wiping the tears from my eyes that’s the day I will walk away from this lab. This can never be just a job.”

David Ziegler spoke about one of the brain tumours in children he is currently researching. “This is incurable and the most aggressive cancer. There is no treatment from day one.

He told the story of American Lauren Hill who had developed the IPG brain tumour . Her story went viral on

Erin  Died aged 14

Erin Died aged 14

social media as she spent the limited time she had left raising awareness of the disease and the much-needed funds to fight it . There was a meeting mostly of scientists at which they showed a video after she died. She had been a basketball player and all she wanted to do was get on the court again. She did this and scored the winning basket…captured on the video. All this happened just a few days before she died. Ziegler said: “The whole room was in tears.”

Michelle Haber told J-Wire: ” This is not a job…for either of us. No-one does it for money. No-one does it for glory. You do it because there is a job to be done.

For David Ziegler a close attachment develops between himself and the patients he treats…as well as their parents. “My team spend days, weeks, months with the families and the patient. We guide them through the treatment so you inevitably become attached to them. You become very involved in their lives and are with them through these most difficult times. Many of the children do well and we have an 80% cure rate for childhood

Hugo - survived cancer

Hugo – survived cancer

cancer. So for most of the time you have a fantastic relationship as you are by their side as the recovery process takes place. It is very satisfying to see them five years down the track on their way to growing up to be healthy active adults.

It’s that one in five that don’t get through…that’s the hardest part of my work. There is no conversation more difficult than the one in which you tell parents that there is nothing you can do for their child. As a parent myself you realise that there is no bond stronger than the one between a parent and a child. If need be a parent will give their own life for their child. So telling parents that there is nothing we can do…well, that is the most difficult conversation you could have,”

David Ziegler added: “This is what motivates me to do what I do…I want to have fewer of these conversations, We have to keep doing what we’re doing and try to find newer and better treatments. Sometimes we can offer a

Nathan  died aged 2 1/s

Nathan died aged 2 1/s

new drug and we don’t know if it’s going to help but at least it’s something we can try. That, in itself, is a huge step forward.”

The pace of steps forward Dr David Ziegler referred to is directly linked to the availability of funds for research. He said: “The more funds we have, the more we can do. Research is expensive. One person in the lab for one year represents $100,000. When you are carrying out research, you are investigating the unknown. Most experiments don’t work. We have to keep slogging away until we find that Eureka moment. It takes time, patience and money.”

Michelle Haber added: “Fifty years ago, all the children died, Now 80% survive. What’s made that difference is medical research and what has driven that research has been the funding. If we are to convert that 80% to 100% and al children surviving, we need scientists at the bench.”

She said that there are 50 children walking around today, leading normal lives, as a result of special leukaemia tests developed at the Institute. She said: “That took three scientists around 10 years to develop and produce successful clinical results to make these tests happen. That’s $300,000 a year for ten years…we’re talking $3million. How do you quantify a child’s life?”

Haber pointed out that many family members had asked what they can do. “Donating to our research is the one thing everybody can do. The money will translate into children being alive who otherwise would not be”.

Children can be diagnosed with cancer from birth. Michelle Haber said that she is often asked why there is a specific institute to deal with children’s cancer. She told J-Wire: “Children’s cancer is very different to adult cancer. Children don’t get melanomas, breast cancer, bowel cancer, prostate cancer or lung cancer because they have not been exposed to many of the environmental influences which cause these cancers. They can develop cancer from the time they are being formed in the womb. As the cells are dividing to form the new baby, something goes wrong with one cell. Cancer in children relates to what happens during the embryonic stage. Children get cancers of the nerves, and of the blood which accounts for a third of all cancers in children.”

David Ziegler said that there were no public warnings to prevent cancer in children. “There are no ads for children telling them not to smoke or not to sunbake. Also the drug companies are investing billions into prostate cancer and bowel cancer. Kids don’t get these and the drug companies aren’t investing in developing drugs for kids. It’s a small market. The breakthroughs for kids can only come from units like ours.”

Michelle Haber said that parents confronted with the death of a child will ponder as to what they can do to put some sense of purpose into “the short time that child has had on this earth.”

She said: “They will often allow us to carry on scientific research after death. Where a child has died from a tumour in the brain, David has set up protocol where the parents donate the tumour. David grows the cells in the laboratory. Ethicists said ‘you can’t do that’ but the parents said ‘we must do that’…and the parents won. Children should not die and it is our moral obligation to do whatever we can to prevent this happening.”

The parents donate the tissue, for us it ro provide the science and it is for the community to provide the funding to allow us to to what we can do.”

Although the unit receives substantial funding from both federal and state governments, the unit remains well short of the funds it needs to accelerate its goals with funds having to be continually applied for.

Michelle Haber told J-Wire that “our scientists have spent part of the last three months writing funding applications. She said that the Institute has to raise one dollar from the community for every dollar they receive in conventional funding  to pay for equipment, computers and the cost of international travel to meet with other scientists.

Describing one of the programs, David Ziegler said that they were learning more about the biology of the brain tumours which take the lives of children. There is no operation to reach those tumours so they are examined after the child has passed away, He said: “We treated the children as we treated adults. 250 trials and nothing worked. Using the autopsy protcol we started uunderstanding the biology of these tumours. We found out they were different from adult tumours and were different to any other tumours that we knew about. There was no way I could get government funding for the investigation into theses tumours as it had never been done before. No-one has ever grown cells after a child has died. They said it was impossible.”

Michelle Haber said that many of the financial donors contributed from their credit cards on a monthly basis. She added: “That is the only funding we have which is genuinely secure. $50 coming in each month from an individual means so much to us. Of course we have substantial donors but the core support comes from members of the general public. A small contribution on a regular basis adds tremendous value.”

When asked if she spent most of her time thinking about the research or obtaining the funding for it, Michelle Haber said: “It’s the latter. For every scientist the worry about the funding for projects takes up a significant amount of your intellectual time. It slows the science down.”

Michelle Haber’s dream is to see the 80% recovery rate in cancer in children reaching 100% “so that we can send the children home to their families. We want to work to put ourselves out of a job.”

In order to find themselves out of work, Michelle Haber and David Ziegler need the help of the community to complete the work which inspires them…the survival and cure of all children with cancer.

Michelle Haber went to both Mount Scopus College in Melbourne and Moriah College in Sydney. David Ziegler was educated at Moriah College, Sydney .

The Children’s Cancer Institute was originally known as The Children’s Leukaemia and Cancer Foundation and was established in May 1976 as a foundation that funded the few small childhood cancer research projects then being undertaken. Children’s Cancer Institute opened its own research laboratories in 1984.

You can help Michelle and David in their fight to eradicate cancer by visiting http://ccia.org.au/home/donate-now/?src=why-we-need-your-support.

Bellevue Hill couple Barry and Carol Pryer have personally experienced the traumas of child cancer. Their daughter Kim suffered from the disease as a child and is one of the lucky ones who survived. As a measure of their gratitude to the unit, the Pryers have organised eleven tours of the facility which produced contributions of over $60,000. To join one of the tours and see the labs at work together with meeting Michelle email the Pryers at carol@thepryers.com.

Your donation may contribute to that special experiment which will elicit a loud ‘Eureka’ from Michelle and David.

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