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  Afterwards, Luis described the devastating moment when they realised Mitchel was gone and his family each gave him a kiss goodbye. The paramedics took over the resuscitation attempt until he reached Wollongong Hospital, where he was pronounced dead.

  Urgent calls were made between Luis’s brothers, who raced to the hospital. I arrived home just as the phone was ringing at our place – it was Dad breaking the terrible news. I heard Mum answering the call then cry out and fall to her knees. Mel and I ran in and Mum said in a shocked voice, ‘Mitchel has passed away on the soccer field.’ I’ll never forget the feeling of utter emptiness that washed over me.

  The entire family quickly gathered at the hospital. None of us wanted to believe it was true. We were all so close, and everyone loved Mitchel so much. Our families lived only a few minutes’ drive apart and we spent a lot of time together. My dad was his godfather as well as his uncle. We were supposed to have our whole lives ahead of us but there he was, my cousin dead on a hospital bed, with the marks on his face from the resuscitation attempts, and his parents and siblings in agony by his side.

  I’d never seen death before, not in person. It was as if the ground was falling away beneath my feet. Anyone could die, at any moment, without warning. Not just old people, but children too. It felt so wrong. Why had Mitchel been taken when he had so much to give to the world?

  In the days and weeks after Mitchel’s death Mum, who was deeply religious and somewhat spiritual, found comfort by going to church and praying. But I found myself questioning everything I had believed in. We’d always prayed at school, and growing up I used to pray every night before bed. But now my faith was severely tested. If there was a God, why did He have to take such a shining soul so soon?

  Mitchel’s funeral was huge. Anytime someone dies too young, people talk about how much they were loved and how charismatic they were. The fact that more than 1000 people came to mourn this boy showed that, in his case, those words were absolutely true. The grief was overwhelming as we sat facing his white coffin covered in red and yellow flowers, the colours of the Spanish flag. By his parents’ request, the mourners also wore red. All us cousins wore the same Spanish soccer jerseys we had on that unforgettable FIFA Fan Fest night. Luis, my dad, myself and the older cousins with whom Mitchel had celebrated at Darling Harbour were among the pallbearers, and we wept as we carried his body from the church.

  Two weeks later we went to a special memorial soccer day in his honour, which was organised by the mother of one of his teammates as a fundraiser to help Kylie and Luis with the funeral costs. It was a day full of the sadness at losing Mitchel, but also a celebration of the happy person he had been, and it has turned into an annual event. Plastic wristbands bearing his name and the words ‘soccer forever’ were created especially for that day. I treasured mine and wore it always. Like the rest of the family, I will never forget him.

  Mitchel’s death made me realise the importance of making this life count. At his funeral I made a promise to myself to never hold back when it came to doing something I believed in. I would honour his memory by getting the most out of each day.

  Chapter Two

  So go ahead. Fall down. The world looks different from the ground.

  – Oprah Winfrey

  While I’d been going through what were to me the huge, almost overwhelming, life experiences of Bell’s palsy and my beloved cousin’s death, Cass had fallen through the rabbit hole of life-threatening illness. There were no signs of anything wrong in her childhood or early teenage years. Like me, she loved the outdoors and enjoyed playing sport, in her case netball. Very popular at school thanks to her warm personality, Cass was a real ray of sunshine with a cheeky glint in those big brown eyes. As well as great friends she had an older brother and sister, Chris and Andrea, and parents, Joe and Gloria, who adored her. With Chris and Andrea already having left home, Cass had the run of the house. She turned 16, got her L-plates and was proudly learning to drive.

  But in August 2010, when she was in Year 10, Cassie started getting intense headaches. They didn’t go away. Then came the double vision and nausea, and her back and shoulders started hurting. The symptoms worsened and she lost five kilograms. Her parents took her to the family doctor, who was worried enough about her to send her straight to Wollongong Hospital’s emergency department with a referral for an urgent brain scan. By the time she got there, she was cross-eyed and vomiting. Unfortunately, the place was packed with patients and was four doctors down on the number that should have been working that shift.

  The following year, an official inquiry found that – having been wrongly assessed as a non-urgent case when she’d arrived – Cassie had to wait three hours to be seen. Once it was finally her turn, a medical intern and two more senior doctors, including a staff specialist, looked at her notes and decided it was just a migraine. The doctor who met with her told her she was simply stressed about exams and refused to authorise the scan she’d been referred for, even though Gloria had asked him to. Cassie was then discharged by a doctor who wasn’t senior enough to have that responsibility and didn’t check with anyone who was. This junior doctor sent Cass home, telling her and Gloria she was fine and just needed some painkillers and to relax. (The hospital later formally apologised to the family and brought in new procedures to try to make sure this series of errors didn’t happen to anyone else.)

  Gloria and Joe could see that their daughter was absolutely not fine. So even though it was going against the hospital doctor’s advice, which they felt they should trust, they organised a private scan at a radiology clinic. By the time she went for that appointment, five days after being discharged from the emergency department, Cass could hardly walk.

  On the way home from the scan, Gloria, who had worked for many years as a doctor’s receptionist, looked at the report the radiologist had written. She became hugely alarmed when she saw the words ‘brain lesion’. She called one of the doctors she had previously worked for and read it out to him. After asking her to repeat it because he thought he must have misheard her the first time, he told her Cass needed an emergency appointment with a neurosurgeon; the appointment was made for the very next day. Gloria was already really worried when they went to the appointment, then the neurosurgeon broke the awful news that the scans showed Cass had a very rare pineoblastoma brain tumour. He explained that this was an extremely aggressive type of cancer and that because of where it was placed there was nothing that could be done to get rid of it.

  One of the things those tumours do is cause a build-up of fluid in the brain – hydrocephalus, it’s called. So even though the surgeon thought there wasn’t a cure, Cass still needed immediate treatment to relieve the excess fluid. He arranged for her to be rushed to Sydney’s Prince of Wales (PoW) Hospital, where they did emergency surgery that night, August 29, putting a tube in her brain to drain a litre of liquid out. The sight of the tube when Cass returned from surgery made Gloria pass out, so the nurses brought an extra bed into the room for her. Cass was so sick that Gloria stayed there for five days and nights.

  While this treatment was happening, Gloria and Joe were frantically trying to get more information about the tumour and to come up with some kind of plan that might offer Cass a bit of hope. They sought a second opinion from Dr Charlie Teo, a Sydney neurosurgeon who has become famous for operating on patients other doctors have said are untreatable, just like Cass. He agreed to look at her scans and then told the Nascimentos that he could operate and bring about a huge improvement for her – though she’d still need post-op chemotherapy and other treatments to give her a chance of getting better.

  On September 4, Cass underwent a six-hour operation at Sydney’s Prince of Wales Private Hospital to remove the tumour. Like any brain surgery there were big risks: Cass was told she might not be able to walk, talk or see afterwards. But she came through it just fine, with no apparent side effects. She was allowed to go home to Wollongong on September 7. The tumour was biopsied and they had to wait five lon
g weeks for the results, thanks to an error in which the tissue was sent to Queensland, rather than the US, where it should have gone.

  Finally Cass and her parents met with Dr Teo, who told them the biopsy had shown that the tumour was of a particularly deadly kind. In fact, only 4 percent of people diagnosed with it were still alive five years later. Cass’s reaction was, ‘Okay, well I’ll be in that 4 percent.’

  By mid-October, Cass was sick again with similar symptoms to those she’d had in August: her tumour had returned. This time, instead of surgery, her medical team tried a different approach. In November she started seven weeks of intense radiotherapy to her brain and spine, 36 doses in all. I was told later that the radiation she was given was the strongest a human body could take. Adding to her battle scars from the surgery, it left a brown burn-like mark along her spine.

  Cass was allowed to come home to Wollongong for a few weeks, covering her 17th birthday on December 13, Christmas and January, but by the beginning of February 2011 she was back in hospital to begin five months of incredibly strong chemotherapy. Although she was technically too old to be admitted to Sydney Children’s Hospital, which is adjacent to PoW, her doctors knew Cass’s stay would be lengthy and she would need her family close by. They decided that the Children’s Hospital would be the best choice for her.

  That beautiful hair of hers started to fall out in patches. When she mentioned this to her oncologist, whose hairline was receding, he made a joke telling her not to worry if it was uneven, because the next round of chemotherapy would take care of the rest. She looked right at him and said with that cheeky grin, ‘Well, at least my hair will grow back.’ Cass accumulated a wig collection but decided that she felt more comfortable showing her head the way it was.

  Her immune system was knocked out and she was constantly getting infections, which kept her in hospital for almost six months and then saw her readmitted many times in the months that followed. Within that nine-month period the most time she spent at home in a row between hospital stays was five nights. She couldn’t eat and had to be tube-fed with a milky nutrient-rich fluid, but often she couldn’t even keep that down. She had nine blood tranfusions and four cycles of stem-cell therapy. Her routine during the chemo was Day 1, fluids given intravenously; Days 2, 3 and 4 chemotherapy given intravenously; Day 5, stem cells administered; Day 6 another day on which treatment could be given if needed; and Day 7 an all too brief recovery day.

  Gloria gave up her medical reception job so she could care for Cass and be beside her for every step of the treatment. She spent countless nights sleeping in a chair or on the floor by Cass’s hospital bed. During that time, Cass was so weak she had to use a wheelchair, which her mother wheeled around. Gloria learned to do some of the injections so that Cass could have treatment at home, but they kept a packed bag in the car because they knew that even the slightest deterioration meant another admission. The bag was often needed.

  But here’s the really amazing thing: Cass stayed strong and positive throughout all of this. It was an absolute living hell, yet if you see photos of her from those moments she’s smiling in every one, even when she looks so frail you can’t understand how she survived the day. And later on, when I spoke to the doctors and nurses who treated her and other patients who met her during this time, they all said the same thing: she was happy and her spirit was strong.

  Cass was so sick she couldn’t attend school at all, let alone follow through on her plan to go straight on to uni after Year 12 to study Commerce. But she wasn’t bitter about this. Instead she decided to see her illness as a big bump in the road, something that would delay her plans, not derail them completely. Her main thoughts were how she could help those around her, lifting the mood of other cancer patients and trying to make the nurses’ jobs easier – when they couldn’t find a vein she didn’t cry at the pain or complain about what was happening to her; rather, she used to apologise to whoever it was who was having to jab her over and over.

  At one point Gloria said to her daughter, ‘I wish it was me going through this.’

  Cass’s reply was, ‘Mum, you couldn’t handle it. I’m glad it was me.’

  No wonder Gloria described her as the bravest person she ever met and said Cass was her hero. But when I eventually met Gloria I could see exactly where Cass’s resilient, sunny spirit came from. It’s a terrible, terrible thing for a parent to have to watch their child suffer the way Gloria did, but she always stayed positive. She tried to make the best of Cass’s rare days off treatment and would wheel her out of hospital to the nearby mall so that they could have a little taste of the normality of shopping together. Long before the recent craze for adult colouring-in books, they would colour in together because Cass found it relaxing. Or they would paint on canvases, or do beading, or play games on the iPad, or watch movies. Whatever it was, they did it together.

  Cass’s dad, Joe, took whatever time he could away from his work as co-owner of a very successful business supplying and servicing coffee machines nationally. Chris, who was in the Navy, and Andrea, who was studying on the NSW North Coast, would come to check in on her whenever they could. Visits from friends were trickier because of the distance from Wollongong, and the fact that Cass might be too unwell to enjoy their company when they arrived, so instead they mostly stayed in touch on social media, where Cass took the opportunity to assure everyone she would be absolutely fine. When her netball team went out for their end-of-year dinner they tagged every photo ‘Cassie Nascimento – not in photo due to illness. An important member of the team also.’

  Cass greatly appreciated people’s concern and knew she was loved, but even so she wasn’t in contact with anyone who could truly understand what she was experiencing. The cancer patients she encountered were either young children or older adults. Looking back on it she said, ‘During this time I had no support from any other patient who was going through similar situations. I felt like I was the only young person going through this disease. I felt very alone.’

  However, in true Cass style, she hung in there and by June 2011 the doctors told her she was in remission. It was a long, long way from being cured – you’d need to be free of cancer for five years before that word applies – but things looked hopeful. Cass was making plans to catch up on her schooling and start uni in 2013.

  Meanwhile, things were really coming well for me in the last stage of high school. I was a regular at the gym now, lifting weights (partly to build my strength but mostly just to look good for the opposite sex). I was on a diet high in protein (for muscle development) and low in carbs (to reduce fat and maintain my abs). I had completely cut out junk food, and in addition to playing soccer three times a week I was training three or four times weekly at the gym. I was the healthiest I’d ever been.

  I turned 18 in May 2011 and that felt like a huge milestone. I was really excited to go out and get a taste of the nightlife I’d seen Mel and her boyfriend, Adam, enjoy before me. They took me out with them to show me the ropes – Mel taking on the role of my protector, like she always did.

  I started going out most Friday nights with a mate called Mitchell, nicknamed Scaz, from my soccer team. For years before each game we’d had a routine where we sat together while we strapped up our wrists – we had a superstitious belief that it helped our game. Once it was done we would say to each other, ‘Beautiful, brother’. If anyone asked why we were wearing the straps Scaz would answer, ‘Because we’re brothers’. When we went out, we really enjoyed finding a pub or club where we could keep an eye on broadcasts of the footy and other sporting events and have a bet on them.

  The intense feelings that I’d had following my cousin Mitchel’s death didn’t disappear. I remembered my promise to make the most of every opportunity. I worked even harder than ever before at soccer. Dad was still coaching the team. Moving through Year 12, my school workload got heavier and heavier but there was never a question of me dropping football, and with my new focus I could manage both. Adrian was still in the tea
m along with Scaz and me, and it was very special to have shared that experience for so long. Our team had an amazing run that year and ended up triumphing in the September grand final with a scoreline of 2–0. I scored both goals and was named Man of the Match. All those years of training had led to this moment and I was very happy to have made Dad so proud.

  I pushed myself at school too. The effort paid off: I was awarded early entry to the University of Wollongong, with my choice of degrees in Teaching (Physical Education), Computer Engineering or Commerce. I opted for Commerce, majoring in Marketing. With that out of the way, there wasn’t a huge amount riding on my HSC mark in terms of my immediate future, but it was still really important to me that I do well and I had high expectations after all the work I’d put in. When the results came through I ran around the house in excitement: my mark was even better than I’d expected. One of my teachers said to me, ‘We were all so surprised by your efforts, Jason. There must have been a turning point for you that made you succeed’. I replied by telling him about Mitchel and saying that thoughts of my cousin had been with me strongly when I was taking my exams. I gave a heartfelt speech at our Year 12 formal dinner about what I regarded overall as the great experience I’d had at school.

  As well as my place at uni, I’d been awarded a traineeship with a large well-known organisation. I was on top of the world, and in November went to the Gold Coast with my mates to celebrate schoolies week. We had a great time letting off steam, partying and indulging in a little holiday romance.

  I hadn’t been home long when I started getting back pain on my right side. At first I figured I’d just pulled a muscle at the gym, so I didn’t worry too much about it. But it wasn’t getting any better – when I stopped and thought about it, it was actually getting worse. Dad took me to the physio, which was the usual procedure if I’d done some small damage in training. I did the stretching and gentle exercise the physio recommended, but it still wasn’t helping. Weeks passed with the pain intensifying, even though I’d stopped doing weightlifting or anything else that might aggravate it.