Chris O’Brien Lifehouse | Spring 2016 newsletter

Lifehouse to begin neurosurgeryJune 2016 marked seven years since Professor Chris O’Brien lost his own battle with brain cancer. For the first time since opening in November 2013, patients whose cancer has spread to their brain will also soon be able to have their surgery at Chris O’Brien Lifehouse, complementing our existing services in chemotherapy and radiation oncology. 

Brain metastases are a feared and common complication of widespread cancer in the body, and occur in approximately 15% of adult and 6% of child cancer patients. They are also some of the most difficult cancers to treat successfully.

One of the reasons is that the brain is an incredibly delicate and vulnerable area. Where a tumour has woven itself through the brain’s membranes, surgery is even more intricate and complex.

One of Lifehouse’s neurosurgeons, Dr Brindha Shivalingam says, “When operating on cancer in the brain, innovative and technologically advanced surgical equipment is vital. It allows the surgeon to target the cancerous tissue with pinpoint accuracy, enabling a minimally invasive approach in removing cancerous tissue that has ingrained itself into healthy tissue. Ultimately such precision will provide a better opportunity for a higher level of functionality for the patient post-operatively.”

Lifehouse constantly strives to ensure that our patients who require surgery not only have a strong surgical team who are experienced in cancer care and treatment, but also have access to the most technologically advanced surgical and medical equipment currently available in our operating theatres.

Lifehouse currently has world-class surgeons and operating theatres ready and waiting. However before we commence neurosurgery, we are looking to raise $723,000 for the necessary equipment.

Thanks to generous donations from the charity, Cure My Brain, as well as other key supporters, we have already attracted funding of over $261,000. We therefore need to raise the additional $462,000 to commence this

vital lifesaving work. Your contributions will help to buy equipment such as the technologically advanced BrainLab Neuronavigation System.  The system builds a 3D image of the patient’s brain, allowing surgeons to identify the best approach before surgery even begins. In addition, equipment such as the Storz Transphenoidal Bipolar Forceps and Transphenoidal Curette are essential for the surgical management of skull-based tumours.

So if you would like to help Chris O’Brien Lifehouse purchase lifesaving equipment which makes a tangible difference in patients’ lives, please make a tax-deductible donation via the form attached to this newsletter. Remember every dollar brings us one step closer to saving a life or finding a cure.

Alternatively you can contact Alison Muir, Major Giving Manager, on (02) 8514 0356 or alison.muir@lh.org.au for more information.

Trial uses nanoparticles and radiation to fight sarcomaResearcher specialists at Chris O’Brien Lifehouse and surgeons at RPA Hospital in Sydney, which are both specialist NSW sarcoma centres, have opened an innovative trial injecting patients with a new agent that is activated by radiation therapy.

The agent is a nanoparticle called Hafnium which can be turned on and off by radiation, and which may shrink

the cancer tumour.

Sarcoma is a type of cancer affecting connective tissue, including muscle, bone, fat and cartilage.

This cancer disproportionately affects young people, and is lethal - two in five will die.

Chris O’Brien Lifehouse radiation oncologist, Associate Professor Angela Hong says, “Early phase clinical trials

carried out overseas showed very promising results.

“If this works, the technique could be applied to other cancers. We estimate the trial, if successful, will translate into changed practice within five years.”

Prof. David Thomas, board member of the Australian Sarcoma Study Group, said, “Trials like this one give hope to both sarcoma patients and specialists.”

My darling 20 year old son Rhys is currently in treatment at Lifehouse for Ewing’s sarcoma. Thankyou thankyou thankyou Chris O’Brien as without this fabulous cancer centre and all the wonderful staff, nurses and doctors our road would be soooooooo much harder

Caroline Pagalday

This is a message we received this month from the mother of one of our young patients with a rare cancer.

This message made my day. It’s a reminder that we’re making a difference during what is a really tough time for parents and families as well as patients. I hope it makes your day too. Your

contributions have enriched Rhys’ experience at Chris O’Brien Lifehouse, where he can access expert doctors and treatment in one of New South Wales leading sarcoma centres, and where his mum can feel supported as well.

On the subject of sarcoma, I’d like to thank everyone who donated to our Tax Appeal this year which focused on the care we are able to provide to our young patients battling this disease. If you’d like to find out more about our work in this area, in this newsletter we’ve included an update about one of our sarcoma clinical trials. You can also view a Channel Nine TV news story about it here:

www.mylifehouse.org.au/sarcomatrial.

As you may remember, in our last newsletter we ran an appeal for a new piece of equipment for our Brachytherapy Unit. Not surprisingly, supporters like you responded very generously and we took delivery of the new Flexitron which will enable us to treat prostate and gynaecological patients with the very latest equipment using intense, high-dose radiation therapy.You’ll also notice that in this edition of Open House, we’ve included a question and answer session with May Whitaker, our Deputy Director of Physics, about why she loves brachytherapy and her job so much. In short, it’s the chance to be creative. She’s a great example of the kind of curious, inventive and dedicated specialists we have assembled here at Lifehouse, who develop effective and sometimes surprising solutions in order to save the lives of our patients.

So thank you for continuing to show interest in our work. We simply couldn’t do what we do without your support.

Open LetterEileen Hannagan CEO Chris O’Brien Lifehouse

Thank you for our new brachytherapy unit Thanks to your incredibly generous support, Chris O’Brien Lifehouse recently took delivery of the Elekta Flexitron High Dose Brachytherapy Unit.

The urgently needed funds were raised through grants and donations given in response to our appeal.

The Elekta Flexitron High Dose Brachytherapy Unit is essential in the treatment of prostate and gynaecological cancers, providing 3D imaging for accurate and targeted delivery of radiation directly to the cancerous tissue.

Professor Chris Milross, Director of Radiation Oncology at Lifehouse, both pleased and humbled by the philanthropic support, said, “It is wonderful to have received such generous donations and grants to help us meet our critical medical equipment needs.

In addition to the $115,000 contribution from the Royal Prince Alfred Hospital, the donations from our

supporters make a real difference in our work. This ensures that we can deliver the best possible treatment using the most advanced equipment available. Everyone who has donated is making a real difference to our work.”

Prostate cancer is the most commonly diagnosed cancer in Australia, while gynaecological cancers are the third most commonly diagnosed cancers among women. Brachytherapy is a crucial element in the treatment of

both these cancers.

In fact, cervical cancer patients who are treated

with brachytherapy in conjunction with

external radiation therapy have an improved

survival rate of 50% compared with patients

receiving external radiation therapy alone.

The Lifehouse team would like to sincerely thank everyone who

donated so generously. We really would not have been able to purchase this major

piece of equipment without you!

Make a difference through volunteering

Dora Eisenberg (pictured), has been one of Lifehouse’s longest serving volunteers. At 101 years of age, Dora lives by her mother’s advice who always reminded her of the importance of being a giver, not a taker.

Manager for Volunteer Services, Lorainne Brecard (pictured) said, “Every week we have more than 100 volunteers making a difference to the Lifehouse community through pet and music therapy, refreshments, support and engagement with patients and carers and so much more.”

If you would like to learn more about Volunteering at Lifehouse, please contact volunteers@lh.org.au or phone 1300 852 500 and ask for Lorainne Brecard.

Dale and DooneDale and Doone were nearing their first wedding anniversary with their 5 week old baby, Jai, when they discovered Dale had a brain tumour. Though it has been a long and difficult journey, they have supported each other every step of the way. Doone tells their story.We went to bed one night with our lives completely normal, as normal as it gets with a brand new baby. Little did we know that when we woke up the next morning our lives would be turned upside down.

Dale had a seizure in the early hours of the morning, it woke me up. I had never seen a seizure before and it was confronting and frightening. Thankfully instinct kicked in and I called 000.

When Dale finally stopped seizing he was unconscious. The ambulance arrived (within 12 minutes) but before they could move him from the bed he had another seizure, then another in the ambulance before they got out of our driveway.

When we arrived at the hospital he was taken for a CT. The nurses took Jai while the doctor broke the news that Dale had a massive tumour and things did not look good at all. I was terrified.

Dale had not yet regained consciousness. He had no idea what had happened since going to bed the night before.Breaking the news to Dale when he finally woke up was heart wrenching. He was flown to RPA later that day.

That was just over two years ago.

Since that day life has been a roller coaster. Dale continued to have seizures which were difficult to control, and he was constantly having to change his medications.

Many people don’t understand a lot about brain tumours and how they affect the lives of the patient and their loved ones. People with brain tumours can often look well, but the reality is very different, with a lot of psychological issues to deal with as well. There were many, many dark days. There were times when everything seemed just too much. It was very isolating.

We have, however, been blessed by wonderful people all around us throughout Dale’s care, from the very first ambulance men, the emergency nurses, doctors, support staff to our amazing GP and of course Dr Brindha Shivalingam.

We owe Brindha everything. She saved Dale’s life and we could not be more grateful. For Dale she is his guardian angel. We have also been supported by our close family and our wonderful neighbours, and even people we hardly know.

We have been to hell and back but as we are coming out the other side there seem to be people everywhere just waiting to extend their hand in support.

Chris O’Brien Lifehouse has saved us – we are so grateful. There is so much kindness and support here, it is most definitely our second family. Jai is completely at home here, he is looked after by everyone, and he especially enjoys the beautiful sound of Owen’s harp playing in the foyer on Mondays. There are so many people here who mean so much to us and so many we want to thank. Hopefully someday in the near future we can make as much of a difference to others lives and return the kindness.

The most important thing for us now is to enjoy every moment, whatever we happen to be doing. When you are in the depths of despair it can seem as though the sun will never rise again, but it does. Every day is a new opportunity.

Neil Sandall – a regular giverNeil Sandall is one of Chris O’Brien Lifehouse’s earliest monthly donors.

Now retired from a career as a senior public servant, he became a regular donor to Lifehouse in 2009, after cancer devastated his own family.

His mother, Delma Sandall, was diagnosed too late and died from breast cancer after a seven-year battle.

“When her breast cancer metastasised, it spread to her spine and caused her a great deal of pain. She allowed her oncologist to carry out a range of different trials on her, because she wanted to ensure that none of her granddaughters suffered like she did,” says Neil.

“At her funeral, we asked for donations

to cancer research instead of flowers.”

“Her interest in medical trials to try and beat the disease was the genesis of my eventual regular commitment to Lifehouse.”

Around the time renowned cancer surgeon Chris O’Brien died, Neil’s father also died. Neil was struck by the fortitude of Chris O’Brien, as he turned his efforts towards creating a cancer hospital with a difference.

“Chris O’Brien made the most of life from relatively humble beginnings and was clearly both an outstanding doctor and visionary healer.”

“I guess Mum would have welcomed this ongoing, if modest monthly donation by me, as my continuation of her dying

wish to see more research into common cancers leading to better treatments and survival outcomes for those living with cancer diagnoses.  This seems to me to be what the late Chris O’Brien had in mind with his Lifehouse vision.”

If you would like to learn more about our monthly giving program, please contact Amelia Davis on (02) 8514 0113 or amelia.davis@lh.org.au.

Please complete, detach and return this form along with your donation, in the envelope provided.

CHRIS O’BRIEN LIFEHOUSEPO Box M5, Missenden RoadCamperdown NSW 2050

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Patricia: A new twist in her life journey

As a spirited academic, wife, jet-setter and veteran of three countries; Patricia’s life story has been an enthralling journey, one she hopes will take another new twist as her story will be woven into the history of the fight against cancer.Patricia has decided to make a gift in her Will and is leaving her estate to Chris O’Brien Lifehouse, “I have no children or other relatives. And I want other people living with cancer to have the kind of experience that I’ve had at Lifehouse, which is special.”

“I’ve been fortunate in having a very interesting life,” Patricia says, recalling how as a young New Yorker, on holiday in Jamaica, she met her future husband, British airline pilot Jack, and moved to London to be with him.

With her first sociology degree already under her belt, Patricia settled into a second sociology degree at the London School of Economics before teaching in London. When her husband was later posted to Sydney, she refused to go unless she got a job. “So I got one. I wasn’t ready to stop work yet.”

She recalls a long and satisfying career as an academic teaching women’s studies, education and sociology at the University of New South Wales. “Then I changed life direction after a couple of decades of teaching. I don’t like to call it retiring. It’s just a new direction.”

Following the death of her husband, her days are now filled with competitive Bridge (“It’s sacrosanct!”), attending the opera and orchestral performances, reading widely and meeting her friends for lunch.

Asked the reason for her bequest to Lifehouse, Patricia replied, “I have cancer. But my experience at Chris O’Brien Lifehouse is as good as it possibly could be. My specialists see me as a whole person, not just a cancer patient. We talk about the concerts I’ve been to, not just about my treatment. I feel as though I’m listened to.”

But she warns that her bequest will be a long time coming. “I have no intention of dying any time soon!”

No matter the amount, a gift in your Will is a thoughtful and visionary way to support the work of Chris O’Brien Lifehouse. If you would like more information about bequests call Alison Muir on (02) 8514 0356 or visit: www.mylifehouse.org.au/bequests.

Chris O’Brien Lifehouse is now preparing to commence neurosurgery within our state of the art operating theatres.

We urgently need to fund the items required for such complex and delicate surgery and we seek your generous support to purchase a wide range of equipment.

By making a tax-deductible donation to our appeal today, you enable us to purchase this much-needed equipment and ensure our patients have access to the best opportunity for minimally invasive surgery with optimal outcomes.

Do you ever think how you can help towards a future free from cancer?Join Team Lifehouse today and do more of the things you love while raising vital funds. Let’s challenge cancer together and make a real difference.

What activity will you choose?Or head to www.mylifehouse.org.au/teamlifehouse for a little inspiration.

EVENTS

Great Southern Crossing Virtually cycle 5200km across Australia for Lifehouse. Date: 1 – 28 September 2016

Tough Mudder Mud and obstacle course designed to drag you out of your comfort zone by testing your physical strength, stamina, and mental grit. Date: 22 – 23 October 2016

Bowral ClassicThe inaugural Bowral Classic event is a Gran Fondo style cycling event held in the picturesque surrounds of the Southern Highlands. Choose from 160km Maxi Classic, 90km Midi Classic or 25km Mini Classic. Date: 23 October 2016

Cycle Thailand to Cambodia On this incredible adventure, you will face the ultimate challenge of cycling over 500km through Thailand and Cambodia over 9 days. Test yourself in ways you never imagined as you power through ever-changing terrains and landscapes. Date: 14 – 27 March 2017

If you would like to know more about our events or Team Lifehouse, please contact Sara Walker on (02) 8514 0300 or sara.walker@lh.org.au.

I want to help Chris O’Brien Lifehouse save lives

Yes,

To make your donation and view our wish list of items:

www.mylifehouse.org.au/neurosurgery

Five minutes with…May WhitakerChris O’Brien Lifehouse’s Deputy Director of Medical Physics:

What training have you completed?

I have a degree in physics, a degree in finance, and a Masters in Medical Physics. I am also learning French, and hope to enrol in an MBA soon.

To explain to people what I do

I like to talk about the prostate brachytherapy treatments because they’re really interesting. People sometimes squirm when I mention the needles and the probes, but I’m really passionate about it!

What do medical physicists do at Lifehouse?

Our role is to support the Radiation Oncology department to ensure patients receive the best treatment delivered safely, accurately and on time. We are the risk managers of Radiation Oncology.

One of the primary functions of our team is to perform quality assurance checks on all the radiation therapy

machines to make sure the optical, mechanical, dose and targeting systems are perfectly calibrated.

What is the hardest part about your job?

Making the call on whether the treatment or equipment is safe for our patients. We’re dealing with intricate radiation treatment plans delivered by complex equipment; many things could potentially go wrong.

What do you enjoy most about your job?

The reason I love oncology is we’re actually treating patients.

When I walk around the department I see the loveliest patients. They’re living life as best they can; it’s a lesson learnt. I also love the problem solving aspect of my work. When you see there’s a quality assurance check that needs to be done and there’s no tool to do it available on the market, you create it yourself. We currently have a student creating a new piece of software to improve the quality of a check for brachytherapy prostate treatments. We’re nearly at the point of testing, and are really excited about its possible widespread application.

What attracted you to working at Lifehouse?

When the department was transferring from RPA I was approached by several other hospitals but I chose to stay at Lifehouse because I felt we had the opportunity to do something different here. I love that we’re a not-for-profit hospital.

My biggest achievement so far…

For me the biggest achievements are creating customised solutions for unique problems. For example, I created a radiation shield using a contact lens with a tiny piece of lead for a patient’s eye when she was being treated for eye cancer. The shield meant she could retain her sight and continue her art career, and she painted me a pretty little landscape as a thank you.

Has someone in your life been affected by the disease?

My mother had surgery following a cancer diagnosis last year, and is now having chemo here at Lifehouse. It came as a real shock because we don’t have a family history of cancer. It was like I went into dual personality mode: the scientific, logical part of me thought about the treatment process and understood that all was progressing as planned, but the human side said, that’s my mum!

Can you tell us about a particular patient who has had an impact on you?

The patients that have the biggest impact on me are leukaemia patients, because the treatments are so intense, and you end up spending a lot of time together. It’s also one of the few treatment techniques where Medical Physics is directly involved with the patient; we’re usually working behind the scenes, after hours and weekends, so people don’t often see what we do. During these treatments, I get to know our leukaemia patients quite well and meet their families.

Sshhhhh, wombat at work!

Look who came to visit! One of our rural patients brought her foster baby with her to Lifehouse as it was too young to be left behind at home.

A significant number of our patients come from rural areas and our specialists are a vital part of the health network serving these patients.

A Hair-Raising Experience for the Best of CausesThis Winter, Charlie Wallace is the coolest kid at his school. But not for the usual reasons that make 7 year-olds cool. He’s just had his head completely shaved to support his mother’s fund-raising event.

Mum, Jo, is a Chris O’Brien Lifehouse patient, whose treatment for cervical cancer involving surgery and chemotherapy, has now progressed to her being officially “in remission”.

Young Charlie decided to do his bit, and show solidarity with Jo, by publicly being shorn at a school fundraiser. He wasn’t alone. Two teachers also submitted to the shearing ritual.

The event was a “Breakfast of Champions” held at Australia Street Infants School with proceeds going to Lifehouse. For Jo, the support she received during her treatment had made it a very positive experience.

If you would like to do something brave and join Team Lifehouse, please contact Sara Walker on (02) 8514 0300 or sara.walker@lh.org.au.