By Your Side

by Jason Carrasco

  I ran up to her as she came down off the stage and gave her a hug and kiss, whispering in her ear, ‘I’m so proud of you, woman!’ Then her parents swept her into their arms for a group hug and simultaneous cheek kisses.

  But it wasn’t just us who were impressed. Cass got a huge response. A number of the high-profile businesspeople who were present made a point of coming up to her afterwards to give her their cards, telling her to call them when she was through her treatment because they would like to offer her a job in their organisations. Others told her how touched they had been by her words and how they would continue to support the development of dedicated Youth Cancer Centres. Cass was thrilled at how well it had all gone and said she was so glad she’d said yes to doing the speech.

  The Sony Foundation team had been talking to various media organisations trying to figure out who might show our CASNAS film once it was finished. One of them was the Seven Network show Sunday Night, and earlier in the evening one of the Sony people had pointed out the show’s executive producer, Mark Llewellyn, who was present. I’d been wanting to go up all night and make contact with him, but the moment never seemed quite right. As Cass and her parents were about to take the stairs out, I saw Mark by the elevator and walked over. I introduced myself and asked if he knew Chris Reason, telling him about the impact Chris’d had during my treatment and remarking that I’d always wanted to meet him in person.

  Meanwhile, Cass was wondering where I’d drifted off to and now she came and joined us. Mark and his wife warmly congratulated her on the speech and said they loved the work the two of us were doing. Mark and I exchanged email addresses, and he told me if I ever needed anything not to hesitate to let him know. He also said he would get me in touch with Chris Reason. (True to his word, he sent an email first thing Monday morning putting Chris and me in contact.)

  A couple of days later, Cass and Gloria gave another interview to the local Illawarra Mercury newspaper, this time about oncothermia. The paper quoted Gloria saying Cass’s scans had been clear of cancer for six months since the most recent operation, adding that the family was really hopeful. They also talked about being able to go on a European holiday and looking forward to the following year when Cass wanted to go to TAFE to get the qualifications that would enable her to enrol at uni. The holiday was something all the Nascimentos were keen on, but Cass was absolutely beside herself with excitement. They were going to go to the Greek islands for two weeks. It was all cleared by Cass’s doctors and the tickets were booked. They’d be leaving in early September.

  August 22 marked 12 months since my abdominal surgery. I had been cancer-free for a full year. It was a big milestone for me. Cass and I got together that morning and I handed her the camera and told her to film me. ‘What are you doing now?’ she asked.

  ‘I want to say something,’ I said. ‘Just hit record.’ When the red light came on I started, ‘Today is the 22nd of August. It’s my one-year anniversary of being cancer-free and I wouldn’t want to spend this day with anyone else but a special girl name Cassie Nascimento.’

  Cass put the camera down and came running into my arms. ‘I didn’t know it had been that long! Look at the most amazing person you’ve become. I am so proud of you.’

  We decided to get together with a few friends, hers, mine and ours, to celebrate the occasion. The two of us had worked so hard to get a bit of normality. Cass had a way to go, but the signs were all good. The sponsors’ event marked the end of filming; now there was just the editing to do and our project would be a reality. Various TV shows were interested in the film. Cass was about to go on her longed-for holiday. Everything was looking up.

  Everyone was over 18 and there was enough alcohol to go around. Apart from the glass she’d had for courage at Customs House, Cass had been staying healthy and not drinking. I looked over at one point and realised she must have had a glass or two, because she was on the couch looking a bit woozy. I went over to her and, pretending to be cranky, said, ‘Have you been drinking?’

  She dropped her gaze, like a little kid caught out. ‘Maybe … will that mean you won’t love me anymore?’

  I went and got her a glass of water and handed it to her. ‘Don’t be silly, I’ll always love you.’ Her eyes lit up and we smiled at one another. I couldn’t resist making a joke, adding, ‘But I’ve been on drugs before, so don’t trust anything I say!’

  Cass said with a laugh, ‘I’m a drug addict too!’

  Anyone listening in might have got the wrong idea, not realising we were talking about our chemo drugs, but we didn’t care. I put out my hand. ‘C’mon, let’s get you up and you can show off some of those dance moves.’

  Cass loved to dance to music videos at home. If she could, she’d get up and dance around the living room. If she felt really sick, she’d ‘dance’ sitting on the couch. It always made her feel better. But now she was wobbly on her feet. The alcohol played a part, but she hadn’t had that much. Three brain surgeries were bound to take a toll on coordination and balance. I’d hoped that’s all it was as I arranged a ride home for her.

  A few days later, it was time for one of Cass’s regular check-up MRIs. She called me up immediately afterward to say she had been in the machine for two hours, an unusually long time, and when she’d come out the technician operating the machine didn’t respond in the way they usually did. Previously, she said, when the scans had been clear she would be allowed to get up off the table that slid into the machine and while she was doing this she’d ask, ‘So how does it all look?’ They would say, ‘As you know, we have to wait for the radiologist to examine the film,’ but they’d be smiling with lots of eye contact.

  This time the body language had been very different and there was minimal response to her conversation. Naturally, she was worried about what the scans might show, but she managed to keep her spirits up, telling herself there was no point assuming the worst, she’d just have to wait for the official report in several days’ time.

  August 31 marked three years to the day since Cass had been given the initial MRI that revealed her cancer. She took to Facebook to thank everybody who had stood by her in that time, posting: THANK YOU TO MY FAMILY AND FRIENDS WHO HAVE SHOWN AMAZING SUPPORT TO ME OVER THE PAST COUPLE OF YEARS. WITHOUT YOU I WOULDN’T BE HERE <3.

  She then uploaded a photo of her lying on the heated bed receiving oncothermia. Her comment was: LAST SESSION OF ONCOTHERMIA AND ONLY 3 MORE DAYS OF CHEMO!! THEN I’LL BE FREEEEE! #BYEBYE #BEATINGCANCER

  Three days later in the waiting room for a visit with her doctor to find out the results of the scan, Cass wrote a Facebook post:

  OFFICIALLY 3 YEARS SINCE MY FIRST BRAIN OP! STILL DOESN’T FEEL REAL, THANK YOU SO MUCH TO EVERYONE WHO’S SUPPORTED ME THROUGH THIS TIME, YOU’VE HELPED ME OVERCOME ALL OF MY OBSTACLES! & TO EVERYONE ELSE FOR YOUR KIND WORDS. LOVE YOU ALL VERY MUCH.

  But shortly afterwards, when her appointment was finished, she added: SO AS OF 10 MINUTES AGO MY ONCOLOGIST UNFORTUNATELY FOUND ANOTHER 2 SMALL TUMOURS IN MY BRAIN, SO LOOKS LIKES MY JOURNEY ISN’T QUITE OVER JUST YET.

  Cass was downplaying the bad news, as always. Although she remained focused on a cure, she knew the odds were stacked against her. And in the meantime, there would be no European holiday. No freedom. Just the old enemy back again, along with the prospect of no other treatment left she could try. Joe and Gloria told me later that when they made the call to cancel the trip Cass was absolutely devastated, the most upset they had seen her since her ordeal began.

  As soon as I saw that Facebook post I tried to call Cass. She was in no mood to talk and let it go through to voicemail. However, she did text me later with a typically upbeat message, saying they had ‘found it early’ and that everything would be all right. It was a courageous response, but I wondered how she was really feeling.

  Her doctors had told her they wanted to wait 10 days to see how much the tumours grew in that time, then they would know what options, if any, they could offer her. In an effort to give her
something to look forward to, Cass’s parents surprised her with arrangements for a new holiday. She wasn’t well enough to fly overseas, so instead they would give her the most special experience they could: a few days in the Snowy Mountains with her brother, Chris, and his girlfriend, Carly, and Cass’s sister, Andrea, and her husband, Paul, and baby Jack. They could drive there, and even if she couldn’t do much more than sit and look out at the gorgeous view, Cass would be surrounded by love and laughter. They would go on September 15. Cass was delighted. She didn’t dwell on the disappointment over Europe, just focused on this new trip instead.

  I was in close contact with Sony Foundation, especially Sophie and Ali, who became supportive friends to both Cass and me as time went on. Soph and Ali had been there throughout the filming of our clip and made sure to provide us with everything we needed to finish it. Whether that was reminding us not to look straight at the camera, or holding up signs with our scripted lines, or simply encouraging us by telling us how well we were doing!

  Naturally they were hit hard when they heard about Cass’s relapse, and were quick to try to get our clip out there. They had a 10-minute rough cut from the existing footage, which they were talking to various TV shows about. Soph and Ali were also constantly asking me for updates on Cass’s progress and sent her Sony DVDs so she wouldn’t get bored and even a Despicable Me toy collection, which she absolutely loved! We discussed doing some extra filming to round out our clip, but I really wanted Cass to see what we had already done as soon as possible. So it was a really nice gesture for Soph and Ali to drive down from Sydney to personally deliver a DVD copy, and to watch it with us at Cass’s place with her extended family.

  Cass’s living room was crowded with relatives, including her sister, baby Jack, and some of her cousins. Cass was feeling weak physically, but she was in great form. She smiled and laughed all the way through as we watched the footage.

  I had a matching smile on my face. I felt really proud that I had faced my fears about going public with my experiences. My worry had been that anyone who saw the film would always think of us as ‘cancer kids’, but I could see now that the opposite was true. It wasn’t a sob story. By coming out and talking about our experiences in this way, we would help other young people because they would see that cancer was just something we were dealing with – it didn’t define us.

  Cass’s big family loved what they’d seen, cheering and clapping at the end. Cass put her hands out to me and said, ‘Come here, you big head.’

  I went over to where she was sitting and gave her a hug. ‘I told you we could do it!’

  With a cheeky grin she said, ‘You’re not that crazy, after all.’

  The following Sunday the Nascimentos set out on their vacation to Thredbo. It was a five-and-a-half hour trip if you drove continuously; with a couple of comfort stops it would be well over six hours. Cass was exhausted when they got there but figured she had plenty of time to take it easy and build her strength back up over the next few days. But the following morning she woke up vomiting, unable to walk or even talk. Her parents heard her, rushed in and saw what state she was in and called an ambulance. It took nearly two hours to get her to the nearest hospital, at Cooma. There, Cass was put on steroids to reduce the swelling in her brain. Her treating doctors contacted her regular medical team back home, and together they made a plan for her to return home as soon as she was stabilised.

  She responded so well that she was only there one night, then was fine to travel. Back at home on Thursday, September 19 she texted me:

  I’VE BEEN FEELING SO SHIT. I’M SUPPOSED TO BE AT THE SNOW RIGHT NOW BUT ON MONDAY I HAD NO MEMORY OF WHO I WAS OR HOW I ENDED UP IN COOMA HOSPITAL AND WE HAD TO COME HOME SO I’VE JUST BEEN IN A REALLY BAD MOOD! BUT I LOVE YOU, BUD, AND I’LL CALL YOU WHEN I’M BETTER SO YOU CAN COME SEE ME :D

  The next morning I tried to phone her but she texted me, CAN WE JUST MESSAGE? I CAME IN MY ROOM TO CALL YOU BUT MY MUM FOLLOWED ME, LOL.

  Andrea and Jack were still at the family home but had to go back to their own place at Coffs Harbour a few days’ later. Cass didn’t have any appointments for a bit and was feeling well enough to travel again so she, Gloria and Joe decided they would make the trip too. Cass wasn’t feeling great when they got to Coffs, so they went to the hospital and she was given another MRI. The results were encouraging in that her tumour hadn’t grown since her previous scan.

  But just a couple of days later, Cass woke up in such a bad way she didn’t even have the strength to knock on the wall adjoining her parents’ room or call out. Her phone was in reach and she managed to send them a text, I’M IN SO MUCH PAIN PLEASE GET MUM TO GIVE ME A PANADOL. They raced in to her, saw the extreme distress she was in and called an ambulance. Again she was rushed to hospital and given an emergency MRI. The news was grim. In those few days the tumour had spread rapidly.

  As Gloria sat holding her daughter’s hand, waiting for the doctors to come in and discuss their recommendations, Cass suddenly began having a major seizure. A nurse rushed in and began Code Red procedure. Joe and Gloria were quickly taken out of the room as doctors and other nurses flew in. Cass was put on life support. The doctors then asked Joe and Gloria to make an agonising decision: did they want efforts to resuscitate Cass if this happened again? One doctor said to them that they should think about a ‘Do Not Resuscitate’ order, since even if she was brought back Cass would likely only last another week or two and would suffer a great deal.

  While this conversation was still going on, before Joe and Gloria could talk about it and try to reach a decision, Cass went into another seizure and had to be resuscitated again. She was stabilised enough to move her to intensive care, where she remained on life support. Not knowing how long she had left, her parents called a priest, who came and performed the Last Rites. Amazingly, the next morning she woke up. Unsure how Cass was feeling or how much she knew of what had happened, her mother said gently, ‘Would you like some breakfast, honey?’

  ‘What are my options?’ Cass replied. It was an incredible transformation from the night before, but it soon became clear she was still in a bad way and very disoriented.

  Cass was transferred by air ambulance to Sydney’s Prince of Wales Hospital. Dr Charlie Teo was away, but the assistant surgeon who was filling in for him told her parents the scans showed the tumours were all over her brain and she would likely have only a few more days. Her medical team gave her the option of going to Wollongong Hospital or going home. Cass opted for home.

  Joe and Gloria had kept me informed about what was going on the whole time, and when they told me she was coming home I’d gone out and bought a large cuddly toy of one of the Minions from Despicable Me and a phone cover featuring characters from the movie, the one we’d watched together over and over when I was in hospital. I’d wanted to wait until Cass was well enough to see me so I could give them to her in person, but after Gloria called I went straight around there, stopping only to pick up a beautiful bunch of flowers on the way.

  Gloria greeted me at the door with a huge hug. Crying, she said, ‘I don’t know what to do anymore. I’ve tried everything’.

  Her pain was terrible to see. All I could do was hug her back and say, ‘You have done such a great job already, Gloria. But we have to keep going.’

  Cass was too unwell to see me, so I left the presents with her mum. A few hours later she had rallied enough to send me a text: I LOVEEEEED THIS DESPICABLE ME STUFF, YOU’RE A SPECIAL KIND OF PERSON, YOU KNOW THAT? CAN’T WAIT TO SEE YOU SOON WHEN I’M FEELING BETTER XX.

  I felt a desperate need to do something to help Cass and her family. The only thing that was within my power was CASNAS, so I put all my energy into getting national exposure for it before it was too late. The Sony Foundation team and I had made huge headway with one of the country’s most high-profile TV shows. They were very interested in the story, but these things tend to move slowly. I told them we had no time to waste. They’d said that if they ran a piece they would be a
ble to use some of the footage that had been put together, but they would also need to shoot new interviews with Cass and me and our families using one of their star interviewers.

  After what had happened, it was understandable that Cass’s parents didn’t want to let her out of their sight. There were worrying signs about the effect the tumours were having on Cass’s memory. One of her friend’s birthdays came around. Cass always made a point of posting a lovely message on people’s birthdays, but this time she posted a message on her friend’s wall, saying how sorry she was that she’d forgotten the birthday. A little while later she posted another message along the same lines, then another and another. She did it about 10 times in all, and you could tell from what she wrote she had no memory of having done it before. If we were going to get this segment on the air, we had to get the interview sorted as soon as possible.

  I pushed hard and the producers agreed to go ahead. But on a show this big they don’t just send the camera crew and the star straight in – there is a whole pre-interview procedure. So they sent a producer and camera operator down from Sydney to see us. We met at the Nascimentos’ house, with her mum and dad and Cass all present. The TV people told us about how the process worked and explained how they would use the existing footage and what extra they would need to film. They came across as very genuine, caring people who really wanted to help us achieve our aim of helping other young cancer patients. But they had a job to do and they didn’t shirk from it.

  Once all the basics were out of the way they started asking really specific questions and noting down the answers: first about me and my diagnosis and treatment, then Cass’s. They’d asked where I was in terms of remission versus being cancer-free, then they had a question that brought complete silence to the room: ‘So what’s the prognosis for Cassie now?’