If there is a relapse in my particular form of cancer, the survival rate decreases dramatically. I absolutely did not want to die; I wanted to make the most of my second chance at life. But by now I’d learned that I couldn’t control my future, not fully, the way I’d once thought. I could only control my actions and responses. The old Jason had felt fiery anger and disbelief and terror. Now I could look at my life in a much calmer way, with acceptance and gratitude. I felt that I had nodded my head to the universe and said, ‘I get it. I understand. I know what I have to do now. Thank you for waking me up.’
In fact, I went one step further. I now saw my experiences as a competitive advantage. I’d been exposed to things most 18-years-olds couldn’t even imagine. That wasn’t a burden. It gave me the gift of perspective, helping me understand that life is too short not to do something absolutely remarkable.
With this newfound sense of myself and my place in the world, I weighed everything up and decided to trust in Dr Patel’s view that the chemo was not necessary. Only time would tell if it was the right choice.
The Nascimentos, too, had some choices to make. Even though the plans for Germany were in place, Joe hadn’t stopped researching other possible options, as they believed traditional therapies only prolonged the chances of Cass’s disease coming back. He came upon a place in Texas called the Burzynski Research Institute. The institute didn’t just offer a chance of extra time for brain-cancer patients, its founder, Stanislaw Burzynski, claimed he had developed a revolutionary technique that could cure inoperable tumours.
It’s not hard to imagine the effect this had. It was a huge surge of hope when Cass and her parents had been told there was no hope left. She texted me, WE GOT THE BEST NEWS TODAY, JASE. THIS PLACE IN AMERICA WORKS ON A FULL CURE :D.
The more they looked into it, the better things seemed. Aside from the institute’s own claim, there was a 2010 documentary about its work called Burzynski: Cancer is Serious Business, which had a slick website showing that the film had won several impressive-looking awards for its account of the doctor and his fight with the American body that regulates medical treatment, the Food and Drug Administration (FDA). Looking for all the world like an independent, rigorous documentary, it dealt with the controversy around Burzynski’s work head-on, positioning him as a medical champion whose work was being suppressed by the greedy, heartless vested interests of ‘Big Pharma’. It included interviews with patients who said he had cured them and was promoted with positive quotes from critics at major newspapers. Who wouldn’t be impressed?
Joe did even more research and learned of a patient in Western Australia who had undergone the Buryznski treatment in the US. He contacted her via Facebook and found out that the patient had a similar brain tumour to Cass, and at the time had been pronounced fully cured.
Cass was full of optimism and excited about the prospect of being cured. She was eager to get started (although happy to go via Los Angeles, where they planned to do some shopping and sightseeing, including going to Universal Studios).
Treatment at the clinic was incredibly expensive. I would never have been so rude as to ask what it cost the Nascimentos, but plenty of parents have spoken publicly about paying between tens and hundreds of thousands of dollars, because they would do anything in their power to help their children. That’s exactly how Joe and Gloria felt, and their business success had given them the means to act on those feelings. The flights to Germany were cancelled; instead, the family would be heading to Texas in late October.
Before her plans changed, Cass would have been away on October 25, the date of the Sony Foundation You Can fundraiser, which Dr Antoinette had told me about. Now she would be here and I thought we should go together. I still couldn’t straighten up properly because it felt like there was a too-short string between my belly and my head, but this was a cause that was so important to both Cass and me, that if she agreed to go despite everything that was happening in her life, I would do whatever it took to be there with her.
Sony Foundation confirmed they would be delighted to have us there as youth ambassadors. I wanted to speak at the event. I felt an overwhelming urge to publicly acknowledge everything Cass had done for me to let her know how grateful I was. I didn’t just ask; I hounded the Foundation’s CEO, Sophie Ryan, about it. She understood my intentions were good and she also understood how incredibly naive I was about how these things worked. She gently explained that it was only less than a fortnight to the event; its program, including speakers, had been locked in months in advance.
Cass and I caught the train up to Sydney, and when we arrived at Woolloomooloo I realised what Sophie had meant. Unlike a lot of fundraisers, this was a lunchtime event and it was held at a series of adjoining restaurants stretching along the very upmarket Finger Wharf. This was where the city’s social set came to see and be seen throughout the year, sipping champagne next to the sparkling harbour. It was a great setting for a charity event with a difference, and the organisers made the most of it, with a red carpet, stages for the performers, roving TV crews and fabulous food.
The first Wharf4Ward had been held three years earlier, in 2009. It had raised $380,000, and every year the amount jumped as people wrote bigger and bigger cheques. The money was being raised to set up youth cancer centres around the country to help people just like us.
Cass looked stunning. She had on a stylish outfit (of course) and a long brown wig. You’d never have guessed her medical condition just by looking at her. The wharf seemed to stretch on forever and the whole set-up was amazing.
While we were walking, taking it all in, a young girl ran over, calling out, ‘Cassie!’ in an excited voice. They had a giant hug, and Cass introduced me to Bec and explained that they’d been treated for cancer in the Children’s Hospital at the same time. The affection between them was obvious and it was clear how much Cass meant to this girl. That was the first time I saw with my own eyes how much she had helped other people besides me – it wouldn’t be the last.
Cass said to Bec, ‘I can’t even recognise you anymore with that big thatch of hair!’, then she took off her wig (her wound had healed, leaving just a fresh scar). ‘Look, mine’s growing slowly as well.’ Bec’s mother joined us and she, too, gave Cass a big hug.
Some of the Sony Foundation organisers came to get us so we could change into our You Can T-shirts. Then we went into a room where young people with cancer, and their parents, were being hosted. We were each doing the rounds, talking to people at all stages of treatment and recovery. I glanced up after a few minutes to see Cass surrounded by a group of girls aged in their mid-teens. Even from halfway across the room you could see how much they admired her and looked up to her. I walked over to join them just as one of the girls, who was bald from chemo, said to Cass, ‘I hope I look as pretty as you one day.’
With a big smile Cass replied, ‘Please, it’s a wig,’ and took it off her own head and put it on mine, adding, ‘He suits it better, doesn’t he, guys?’
Although she appeared symptom-free, I’d been a bit worried the day might tire Cass out ahead of her big trip, but it seemed to do just the opposite. She was glowing, riding on waves of energy from her interactions with all those other people. I didn’t think her smile could get any brighter, but then we got to meet Sony Music artist Samantha Jade, a big supporter of the You Can program and an absolute favourite of Cass’s. Cass told Samantha how her music had really helped during the worst of the treatments, how she would put in her earbuds and sing along, using those songs to transport her to somewhere more pleasant. Samantha was very gracious and warm, telling Cass how much that meant to her, and insisted we take a photo together.
We also met Sony Music artist and The X-Factor contestant Nathaniel Willemse. Cass and her friends thought he was the hottest guy on the show, so she was delighted to get a photo with him, too. It went straight up on her Facebook page to make all her mates jealous.
As well as raising money on the day, the event was also designed
to raise awareness of the cause and that was done via the heavy media coverage. The organisers arranged for different youth ambassadors to talk to various shows, and they asked Cass and me to speak to an interviewer from the Nine Network’s Today. We were super excited to share our stories. We’d never appeared on television before. Cass had done a number of interviews with our local newspaper, Illawarra Mercury, dating back to May 2011 when she first spoke publicly about the mistakes that had been made on her initial visit to the hospital emergency department. But being filmed is very different to being interviewed in your own home by a reporter with a notebook. We were rank amateurs, and it showed!
First of all, I said I wanted to wear my sunglasses. They were brand new and I wanted to show them off. The producer explained that when you’re watching people talk on TV, it’s always good to be able to see their eyes and read their expressions. I reluctantly accepted that, but I insisted on wearing them around my neck so the world could see them. Meanwhile Cass, who was sitting next to me, was chewing gum and no-one thought to tell her to ditch it. Fortunately there was, I was told later, a kind of charm in how obviously unpolished we were.
The segment that ran was brief (another lesson we learned that day was how much filmed footage goes into even the shortest television sequence) but it got the message across. In it I explained what it had been like for me as a young person in an adult ward: ‘I was 18 when I was diagnosed and, you know, the person next to me was 80. There were people dying next to me and there was no-one I could go to for guidance. It was tough.’ At this Cass looked up at me, chewing enthusiastically, and nodded. I explained a bit more about how Cass had come into my life and how just as I had found out I was clear of cancer she had relapsed, then added, ‘But we got through it together,’ to which Cass added, ‘And we can do it again.’
After the interview the reporter asked us if we’d met Sally Obermeder, the Channel 7 personality who’d been very open about her own breast cancer diagnosis and treatment. When we said no, she asked if we would like to be introduced to her and we agreed wholeheartedly: ‘Of course. She’s one of us!’ She took us over and introduced us to Sally, who was so lovely and genuine. We instantly felt a connection with her as we all shared our stories. I’ll never forget her comforting hugs that let us know we weren’t alone. Both Cass and I were inspired by how prepared Sally was to talk to the wider community about her battle in order to raise awareness and give hope to others.
As we were making our way out, the girls who had flocked to Cass earlier surrounded her again, giving her a big group-hug goodbye. She made sure each one got her details and told them all to stay connected with her on Facebook: ‘I’m being serious, guys, I want to hear from you!’
The two of us laughed and mucked around the entire train trip home. Cass was so energised by the great cause and the fact that she’d been able to help other young cancer patients. It was only a week until she and her parents were heading off to Texas for treatment they hoped would save her life but she didn’t refer to it once, just kept the conversation bubbly and jokey and fun.
Chapter Ten
Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope.
– Hal Lindsey
Cass headed off for what she had been told she needed: a six-week inpatient stay, followed by six more months of treatment at home. The Wollongong–Houston time difference made it tricky to talk in real time, but we communicated every day by Facebook messages and spoke once a week by Skype. Cass was really positive and optimistic (no surprises there), but she felt like there was solid ground for her hope, thanks to the Burzynski Clinic’s claims. She described her daily routine. They had inserted a central (or PICC) line into her chest and it was connected to a drip 24/7. Each day she was injected with up to 10 litres of fluid containing ‘antineoplastons’. The high sodium content made her very thirsty, and because there was just so much liquid passing through her system she was forever going to the toilet.
Between getting up every hour to pee and the timer she had to carry around that went off when it was time to change fluid bags, she couldn’t sleep properly. Cass told me that the treatment didn’t make you feel sick in the way that chemo did but it really affected your quality of life. Still, she was determined to stick with it on the promise of a cure. She talked about other people she’d met there and how they seemed to be doing well. Cass felt like things were looking up for her.
The Burzynski doctors were insistent that she needed to continue the treatment back home, but because it was completely unproven and unapproved by health authorities no Australian hospital would do it and nor would any registered nurse be able to come to their house and oversee the treatment. So Gloria took it on herself to learn the process and become Cass’s full-time carer. Every day when she and Joe came in to see Cass, she brought her notebook along and took lessons from the American nurses (who could legally provide the treatment because it was a ‘drug trial’).
It really hurt not to be able to be there for Cass like she’d been there for me. It was all very well to message her about not forgetting to wiggle her toes when they needed to take blood, but I wanted to be by her side, holding her hand, making her laugh, reassuring her that she could count on me no matter what. Instead, I was thousands of miles away still recovering, walking a bit further and standing up a little straighter every day.
Around the middle of November it was time to go back to Westmead Hospital to see Dr Patel and then my oncologist, Dr Aghmesheh, for my crucial three-month post-surgery assessments. The appointment with Dr Patel couldn’t have gone more perfectly. He told me there was no sign of the tumour regrowing. With a smile on his face he said, ‘Jason, go live your life. I don’t ever need to see you again.’ I hugged him and told him how grateful I was. I felt like I was walking on air.
With Dr Patel’s okay, I went back to work one day a week, planning to build up my days as I got stronger and stronger. I was excited to be back. It felt like another victorious step in my return to ‘the real world’.
Two weeks later, on the morning of November 28, the Nascimentos came home. I wanted to organise something special for Cass and I’d started early. I had a ‘Welcome Home, Cass’ banner with a teddy-bear motif made up from a supplier I found online. I also bought an oversized teddy-bear themed card on which Cass’s close friends and family supporters could write messages for her, and I spent weeks working around more than 20 people’s schedules so I could meet up with and give them the chance to contribute their best wishes.
Finally I arranged for four of her closest girlfriends to buy flowers and meet me at her place the night before the Nascimentos were due back to decorate the front of their house. We put the banner over their door, and on the door itself put up sheets I had printed out that read, ‘We missed you, Cass’. We decorated their porch and garden with streamers and positioned the flowers and gifts by the door, making it look gorgeous for their arrival.
I didn’t wait for them – I knew Cass would be exhausted after the long trip – but I wrote out my own special message to her in the huge card:
‘Hey my buddy, I have missed you dearly and I have been thinking of you every day. I know things, at times, are tough but I’m going to be there every step of the way and there is a high probability you may get sick of me! I know I’ve decorated your front door before but I think this is the best yet, and will be hard to outdo. However, I would do it over and over again just to put another smile on your silly face and I hope this does. Love always, Jason. P. S. Tell Gloria sorry for the mess!’ (Cass told me later she was very moved by this welcome-home surprise.)
The next day I went to visit. Cass greeted me on the porch, running towards me for a hug, although between my tender scar and the central line she still had in, it had to be a very gentle one. She reached for my scalp, where hair was starting to grow back now that chemo was well and truly behind me. ‘Look at all that hair! I’m jealous, gi
ve me some,’ she said, grinning. She was carrying a stylish little bag and the tube from her central line disappeared into it. Cass explained the bag contained her treatment fluid sacs, plus a portable machine that apparently kept track of how many ‘antineoplastons’ were going into her.
We went inside and she told me about the ‘alkaline diet’ she was on. This was something else Joe had come across in his research. Cass said it was based on the belief that acidic foods fed cancer, so by cutting them out entirely you could slow cancer cell growth. It was very strict and she followed it to the letter. It was mostly vegetarian, with no meat at all but the occasional piece of chicken every now and then as long as it was organic. In fact, everything she ate had to be organic – junk food and soft drinks were completely banned. And to help facilitate Cass’s new diet, Joe and Gloria started their own veggie patch to ensure she had everything she needed to get better.
For a girl who loved her Portuguese food, which consisted of a lot of meat, it could have been really hard work, but instead of complaining Cass embraced it. In one Facebook post, she described her intake as ‘quinoa and everything green! (No meat, no dairy, no pasta, no sugar, no coffee and nothing acidic.) Try it, makes you feel 100x healthier!’ Just like my mum, Gloria loved to cook for her family but Cass started taking over the kitchen, making diet-approved food for herself, her parents and anyone else who came over.
Every couple of hours Gloria had to flush out Cass’s central line, change her fluid bags over and do all the other things a nurse would normally do. Sometimes during that period when I arrived Cass would be sleeping. Gloria would lead me through to the living room, past the pool table covered with dozens of fluid sacs. We would sit together while Gloria manipulated the bags one by one to remove little bubbles of air. She had piles and piles of print-outs of Joe’s research and booklets they had been given by the Burzynski Clinic, including a case study of a patient who had exactly the same treatment as Cass and was said to be wholly cured and thriving.
By Your Side Page 16