Harley donates $100k to brain cancer

Harley-Davidson Australia has invited two brain cancer patients on its 100th anniversary ride with Harley “royalty” and is donating $100,000 to the Cure Brain Cancer Foundation.

Brain cancer patients Paul McLean and Josh Chalmers are accompanying Bill Davidson, great grandson of a company founder, on the anniversary ride from Sydney to Melbourne.

And when they arrive on Friday (May 12, 2017), HD Australia and Harley Heaven, Melbourne, will donate $100,000 to brain cancer research.

HD Australia boss Nigel Keogh says it’s all about “perspective”.

“Riding a Harley is about freedom and if we can give these guys some temporary freedom from their cancer, then it’s been worthwhile,” he says.

The riders are part of a group of about 40 VIPs, media and HOG riders spreading awareness of brain cancer on the ride which rolled into Canberra last night.

Cure Brain Cancer spokesperson Nici Andronicus (pictured above with Josh and Paul) provided some of the harrowing statistics of brain cancer:

• Only 20% of people diagnosed with brain cancer survive for five years and that figure has barely improved in more than 30 years;
• The disease is the biggest killer of children in Australia; and
• It kills more people under 40 than any other cancer.

“Despite these shocking statistics, brain cancer receives less than 5% of Federal Government cancer funding,” she says.

“That is why initiatives like the Harley-Davidson 100 year ride, which raise funds and awareness, are so important.

“In my opinion, early diagnosis is important to maximise the time for specialists to consider treatment options.”

Paul’s daughter, Annabelle, is joining him on the ride after Paul walked her down the aisle last month at her wedding to husband Sean.

It was 11 years after Paul’s initial brain cancer diagnosis.

“Dad has always been my legend, even before his diagnosis”, says Annabelle.

“Since that time, we have learnt to treasure the special moments we get to spend together.”

Paul says he used to ride a Harley Dyna Wide Glide but had to gave it up after his diagnosis.

He and Annabelle are now pillions on the ride with volunteer HOG members.

Josh, is a keen rider and instructor, who says he is now “addicted” to the Harley Ultra Limited he has been riding with wife, Annabele, in the comfortable pillion seat.

“How can you not be addicted when it’s got this much torque?” he says.

“I’ve always thought of riding as a kind of two-wheel meditation.

“When I was first diagnosed with brain cancer, I was determined not to let this disease hold me back from my passion of riding. I now measure my quality of life on being able to ride a bike.”

The ride is part of the iconic motorcycle brand’s celebrations of 100 years in Australia after Morgan & Wacker opened the first Harley dealership outside the S in 1917.

Harley-Davidson Australia’s generous donation to Cure Brain Cancer Foundation will go towards funding further research, advocacy and awareness.

Paul and Josh have also set up fundraising pages that can be found here.

The ride heads to Albury today, Traralgon tomorrow and Melbourne on Friday.

Josh’s ride with cancer

On June 9, 2008, Josh rode his motorbike into work at the Newcastle Air Force base as normal and completed a mission. In the lunch room, he had a massive grand mal seizure and was rushed to hospital.

Josh was told he had a golf-ball sized brain tumour and had two years to live if he was lucky. He was 22 years old. At the time, he was an Air Combat Officer in the Royal Australian Air Force and was only recently back from an eigh-month deployment in Afghanistan.

Two days later Josh had an emergency craniotomy, followed by six weeks of radical radiotherapy. But, as soon as he had recovered from surgery, he was bungee-jumping in New Zealand!

Josh met his now-wife Annabelle in July 2008 at a party on the RAAF base, and it was absolute love at first sight! Josh was two weeks into his radiotherapy treatment at the time and, inspired by the experience, Annabelle became a radiotherapist.

Josh and Annabelle were married in 2012, two years beyond his initial prognosis.

In 2014, after a string of seizures, Josh was told that the cancer had come back. He had his second craniotomy in March. Since that diagnosis, Josh has trialled three different types of chemotherapies, which has proved successful as his tumour is currently stable.

Josh credits his positive approach to his cancer journey to being able to get out on the motorbike. He terms it “two-wheel meditation” and measures his quality of life on the sense of freedom he get from being out on the bike.

Josh has followed his passion for motorbikes into his current career as a rider instructor and is part-way through an Engineering degree. He has just completed his fourth Ride to Conquer Cancer, a 200km bike ride, and over the last four years has raised over $12,000 for Peter MacCallum Cancer Centre. And, of course, more bungee-jumping!

Paul’s battle with cancer

In 2005, Paul McClean was successfully building a start-up media technology business with the Ramsay Group as CEO.

He began to suffer various symptoms that were misdiagnosed, until an MRI and CT scans in February 2006 revealed a substantial tumour behind his left eye involving the optic nerve and the front left brain lobe.

The tumour was removed by world renowned neurosurgeon Professor Charlie Teo days later on February 15 and was subsequently diagnosed as Adenoid Cystic Carcinoma of the Lacrimil Gland. This cancer is very rare and subsequent to consultation with seven leading Australian and international oncologists, impossible to cure.

The ACC prognosis was dire, until Paul discovered the opportunity to gain access to a clinical trial for proton beam radiation with sensitizing cis-platinum chemotherapy at the Harvard Medical School at the Massachusetts General Hospital in April of 2006.

Gaining access to the trial was very difficult, requiring multiple submissions to the Board of Harvard Medical School, including one rejection, before successful resubmission. The reality of the prohibitive trial cost, at $300,000 for the three-month treatment, was a devastating blow.

That was when the local northern beaches community rallied to raise funds for the life-saving treatment and Paul was sent into ‘lock-down’ in Boston to persevere more radiation and chemo-therapy than any other previous patient – Paul has always been a man on a mission. Despite the odds he continues to bravely battle this relentless cancer. But much has changed from his past life of 11 years ago.

Initially Paul returned to his CEO role at Visionbytes Pty Ltd. Over time the pain caused by radiation damage became impossible to manage, and he retired in 2012.

By 2013, five days before celebrating a milestone 50^th birthday, Paul returned to Boston for follow up consultations to discover the recurrence of the primary ACC, together another tumour in the centre of his brain and another positioned around the brain stem. But the worst news was the revelation of a metastases, also on the brain, that explained the increasing impact of symptoms and pain. In September that year Paul realised he had a new prognosis of survival measured in months.

The most difficult part of the four tumours in Paul’s head is the complete lack of medical options. The tumours are inoperable, the symptoms and pain are very difficult and there are currently no available treatment options, despite the best efforts of the Northern Sydney Head and Neck Cancer Centre at Royal North Shore Hospital.

Paul’s wife Nici and five children Annabelle (25), Ash (23), Alexander (14), Ava (13) and Alfie (10)  have played a huge role in encouraging a positive, partying, celebration of a survival over this time, with a resolute refusal to accept any other option other than for him to keep breathing at all costs.

Annabelle, his eldest daughter whom he walked down the aisle and gave away to Sean Miller  has been hugely influenced by her father’s medical nightmare and is now studying her third degree, a Bachelor of Health Science and focusing on nutritional medicine to find natural and alternative solutions to Paul’s condition.

Annabelle and Paul are extremely close, the long-term impact of the prospect that her father was highly likely to die sooner rather than later has meant that she has developed well beyond her years and is resolute in her campaign to make sure the right food is consumed at all times!

“As a family we have held a long-term belief that cures for brain cancers can found and that with greater funding and resulting research the outlook is very positive,” she says.

Having now spent 11 years battling his cancer Paul is seeking through his own experience past and ongoing to help others better cope with the dire circumstance that brain cancer presents.

He believes there are many positive and constructive ways of dealing with brain cancer and making the most of every moment that is left.

“Living in the moment and better understanding and appreciating life, family, friends and community is of the upmost importance,” he says.

Paul McClean was born on 23^rd September 1963 in London, he is now 53 years old, a father of five children and has lived in Sydney, Australia for 30 years.