By Your Side

by Jason Carrasco

  Showing me this material, Gloria was full of optimism. She said to me, ‘We can’t give up as long as there’s hope. If it’s worked for someone else, that’s enough for us to keep going’.

  I did wonder to myself why this amazing breakthrough hadn’t been approved for use in Australia, but Gloria and Joe’s conviction and the force of their love swept away these seemingly negative thoughts.

  We all felt that it was a matter of Cass simply getting through with her treatment and then her future would be open. Thinking back to what Chris Reason had imparted on to me, I used to say to Cass she just needed to be strong and patient for a little while longer then we could both properly move on with our lives as we’d dreamt.

  It was a beautiful warm summer and Cass was frustrated that her treatment meant she couldn’t enjoy it fully – no swimming and less time hanging out with her friends. We couldn’t even go to our special spot because she needed to stay so close to a toilet. But she said, ‘You know what, it sucks that I have this now but I’ll still have fun this summer and I’m going to sunbake in the backyard.’

  We messaged each other every day and I went to visit her as often as she felt up to it, generally two or three times a week. On December 13 Cass reached a milestone that had seemed very unlikely when she was first diagnosed: she turned 19. There was something very special for me in the fact that she happened to share her birthday with my mum. Again, I planned to surprise Cass with chocolates, but this time I wanted to give them to her personally. I bought her a huge celebration bucket of Maltesers (as symbolic of the sweet treat we used to have together in hospital) and another lovely bunch of flowers.

  I pulled up out the front of her house then sent a mutual friend a text as we’d arranged. She texted Cass asking her to come to the front door because there was something waiting for her on the porch (me). But Cass texted her back, SORRY, DARL, I’M AT THE DOCTOR’S.

  Cass’s friend Christine passed this on to me and I thought, Oh no, don’t tell me Cass is in Sydney! I texted her myself, DUDE, THERE’S A PRESENT ON YOUR FRONT PORCH. YOU BETTER GET THERE BEFORE IT MELTS IN THIS SUN.

  She replied, I’M AT THE DOCTOR’S NOW, IT WILL HAVE TO WAIT TILL I GET AT HOME. THE PRESENT IS YOU, ISN’T IT?

  I fired back, NAH, IT’S NOT. PLEASE TELL ME YOU’RE NOT IN SYDNEY.

  I was relieved when she said she wasn’t. She and Gloria were just a few blocks away, and soon enough they finished up with the doctor and I was able to surprise Cass with my gifts. She had the biggest smile as she said, ‘You big cheeseball, being all cute to me on my birthday!’

  Later that afternoon she texted me, DUDE, YOUR MUM RANG ME, THAT WAS THE CUTEST THING OF ALL. EVENTFUL MORNING WITH YOU, BUSY DAY SHOPPING THEN DINNER WITH THE FAMILY. YOU MADE MY DAY THO :D.

  I didn’t see her on Christmas Day, which we each spent with our families, but when we spoke her speech was a bit slurred and she said she was having some trouble walking. On December 30 things took a very worrying turn for the worse. Cass woke up and could not get out of bed. She told me later she was sending the usual messages to her body, the ones you send without even thinking about it that get your legs to move and all the rest, but nothing was happening. Her mum came in as usual at around 7 am to check on her, and Cass tried to explain what was going on but she couldn’t even get her mouth to work properly. Her speech was so slurred Joe and Gloria couldn’t make out what she was trying to say. They called an ambulance and Cass was rushed to Wollongong Hospital and given an emergency MRI, which showed that she had significant swelling near the brain. The swelling was causing pressure on the parts of the brain that control walking and talking.

  Cass was in the hospital for almost a week while doctors tried to reduce the swelling. She was so badly affected by what was happening that even text-messaging was really difficult. She sent a text to try to explain why she couldn’t respond as she usually would: SWELLING MAKING MY SPEECH SLURRED AND WALKING WOBBLY AND MY ARMS R TO WHICH MAKES IT HARD TO TXT … I CAN’T WALK OR TALK AND I GET REALLY FRUSTRATED WHEN I TRY TOO.

  Cass had an awful time when she was readmitted. The wards were full and staff numbers were down over the Christmas New Year holiday period. With no other bed for her, the hospital put Cass, a teenage girl, in a shared room in a men’s ward. Cass, who had coped with so much and still managed to keep a smile on her face, was deeply distressed by this. She kept the curtains around her bed permanently closed but that didn’t help. There was a patient on the ward who must have had some kind of dementia – he kept throwing off his pyjamas and running naked into her room to ‘say hello’. Then there was the visit to the bathroom when Cass hobbled in with Gloria’s assistance, only to find blood smeared on the walls and pooled on the floor. An elderly man who had been the last person to use it had pulled his cannula out while he was in there, and although the nurses had helped him no-one had come to clean it up afterwards.

  Gloria was so disgusted by the conditions and worried about Cass that she remained with her for the entire stay, sleeping as best she could on the chair by her daughter’s bed. I tried to visit every day but Cass was often asleep the whole time I was there, or feeling too unwell to see me. And the nursing staff stuck strictly to visiting hours, so I couldn’t wait it out hoping she’d feel better. At least they agreed to pass on the flowers I brought for her as well as my message that I was thinking of her.

  On those occasions when I did get to talk to Cass I could see things were really getting to her. That cheeky Cass spark was nowhere to be seen. I tried to cheer her up like she had done for me, saying, ‘I know it sucks, but just keep holding on to the thought that it’s only temporary, and after this is over and you’re out of hospital, we’ll stroll to our favourite spot and you can call me all the names you want!’

  Cass was discharged on January 4 and the following day I went to visit her at home. It was so far away from the start to 2013 Cass had been hoping for. I thought I’d prepared myself for the condition she would be in, but when I got there she was much worse than I had imagined.

  Cass was downstairs, and when she came over to greet me she moved like something out of a zombie film. She still didn’t have her muscle control back and she couldn’t bend her knees, so her walk was a very disturbing straight-legged shuffle.

  As bad as it was to see her like this, it was a hundred times worse for Cass to be stuck inside a body that wouldn’t do as it was told. Her speech was still really bad too. She tried to talk, but I just couldn’t make out what she was saying. I didn’t want to distress her any further so I made noises of agreement or laughed along like I understood, but I could see she was getting very frustrated by her inability to communicate. It took everything I had not to let her see how concerned and worried I was. It was also awful seeing Gloria and Joe so determined to stay positive but absolutely eaten up inside about what their beloved girl was going through.

  I would drive over to visit Cass every second or third day, after checking with her parents first. She never seemed to improve. Some days were so bad she had to crawl to get up the stairs.

  I’d always take my laptop when I visited, and I spent hours every night searching the internet for YouTube videos and anything else I thought would make her laugh or even to distract her for a moment or two. Cass spent most of her time confined to the couch in front of the TV. She would watch hour after hour of cooking shows and I would sit beside her. Her favourites were the ones featuring healthy foods and vegetarian recipes. Because she still couldn’t talk, we would communicate by text. I asked her once, YOU MAKE ANY OF THESE MEALS?

  Painstakingly she typed back, CAN’T. BUT I LOVE COOKING AND WATCHING OTHERS COOK YUMMY STUFF. When I was getting ready to go, ever thoughtful and gracious, Cass would express her gratitude: THANKS FOR VISITING, JASE. YOU REALLY ARE THE ONLY ONE WHO UNDERSTANDS. LOVE YOU, PRESH.

  No matter how many times I went over there I never got used to seeing Cass like that. When I got back out to my car, my feelings would overwhelm me and I would have to si
t and take deep breaths for a few minutes until my hands stopped shaking. I feared for her life.

  With no sign of the promised improvement, her Australian team decided they had to try something new. Cass agreed to start taking high-dosage steroids to try to reduce the swelling. The medication did its job, and by late January the improvement was unmistakeable and she was able to move much more freely. The doctors advised, however, that she always had to have someone with her, because her coordination was still affected and there was the potential for her to fall and hurt herself badly.

  The steroids might have reduced the internal swelling, but externally they made her puff up. Her limbs looked large and her face was puffy. The old Cass twinkle was back and she could make fun of her unwanted new look. She’d say to me, ‘You get out of line today and I’ll bash you. Don’t you forget, I’m on the ’roids.’ But there were some things she just couldn’t laugh off.

  One of our friends was having a birthday party and Cass felt well enough to attend, so we arranged I would take her. She felt a bit nervous being around people but was determined to enjoy herself. She wore a stylish wig and carried her Burzynski treatment sacs in her handbag. We arrived and she went off to catch up with some of her friends. I also went to chat with people I knew, and I hadn’t seen Cass for a while when she appeared, excused herself to the person I was talking to, then asked if she could see me alone for a minute.

  Everyone else was drinking alcohol and eating pizza and of course she couldn’t do either of those things. I’d told Cass I wouldn’t either, in solidarity with her, but I thought having to say no every time anyone asked if she’d like something might have been what was bothering her.

  We found a quiet spot at the back of the house with no-one else around. ‘Jason, I have a question,’ she said.

  ‘Sure, I’ll answer anything as long as you don’t bash me.’

  But she was oddly serious. ‘How do I look?’ she asked. ‘Tell me the truth.’

  I paused for a moment, then gave her the same answer I would have anytime she’d have asked me that question.

  ‘You’re the most beautiful girl in the world.’

  But that wasn’t the right answer, obviously, because she starting crying. ‘You’re just saying that to make me feel better,’ she said.

  ‘What do you mean?’ I asked. ‘You are beautiful. Why?’

  She explained through her tears that someone she thought of as a friend had come up to her and asked why her face was so plump and puffy.

  What a cruel thing for that girl to do. She must have known Cass had been sick, but even if she hadn’t, what a terrible thing to say. My first instinct was to storm off and confront the so-called friend about it, but I thought that would just make Cass feel worse.

  Instead, I gave Cass a kiss on one of those puffed-up cheeks and said, ‘More to kiss, dream life’.

  She started laughing and dried her eyes. ‘You’re lucky no one heard you say that, you big cheeseball!’

  ‘Ha! I thought you’d like that one. Look, don’t worry about them, Cass, it’s useless trying to get these guys to understand. We’ve just got to get you through these next six months of treatment. We’ll do it together, and then we can go on from there. We can do this. You can do this.’

  We called our parents to come and pick us up, and we waited together at the bottom of the driveway. Cass was in much better spirits now, her worries replaced by the feeling of love and laughter.

  When her parents arrived I said goodbye and went over to my parents’ car. When I got in they were staring at me with identical expressions on their faces.

  ‘Why didn’t you kiss her goodnight!’ Dad said.

  ‘Well,’ I replied, ‘for one, you guys were looking, and for another, I can’t put too much pressure on Cass at the moment.’

  They looked at each other and smiled knowingly.

  The next morning I reflected on what the supposed friend had said to her at the party and I got irate. I was worried about whether Cass would get upset all over again thinking about it, so I texted her, I CAN’T BELIEVE WHAT THAT GIRL SAID LAST NIGHT.

  She texted back, WHAT ARE YOU TALKING ABOUT?

  For a moment I wondered if she meant, ‘It’s behind me and I’m not going to think about it anymore.’ But she would have expressed that differently. I realised with a lurch that the treatment was taking a toll on her memory. I was happy for Cass to have forgotten about the mean thing that had been said, but what else had she forgotten? Was it possible her feelings might start to change too, and she might begin to forget about our bond?

  Chapter Eleven

  A tiger doesn’t lose sleep over the opinion of sheep.

  – Shahir Zag

  Cass’s surgery was scheduled for February 13. Her oncologist had been very blunt about her chances – she didn’t tell me how blunt – but Charlie Teo’s view was that the surgery offered hope and time to pursue other treatment options. In the two weeks leading up to the operation Cass was really up and down, physically but also mentally, in a way I hadn’t seen before. There was no way of telling how she would be feeling from one day to the next but I visited her constantly, trying to help her make the best of things as much as possible.

  One day during this period a copy of the Sony Foundation’s Shout magazine arrived. It was always good to read it and keep up to date on the efforts being made to fund the Foundation’s various good causes, but this issue was extra special because Cass and I were featured inside! It was a 12-page magazine and an entire page was devoted to our story. Sophie from the Sony Foundation had asked me if I could write a 500-word piece on my cancer experience and what helped me get through it. It was a golden opportunity to write about Cass and all the ways she’d been there for me, a public outlet for those things I wanted to tell the world.

  The article included two photos of us together, the one of Cass visiting me in hospital after my abdominal surgery and a selfie we had taken in our special lookout spot. In the story I explained the sequence of events, with Cass’s initial diagnosis and treatment, my diagnosis and how she had supported me, and then my recovery and her relapse. I said of Cass, ‘She showed me that hope is that thing inside us that insists, despite all evidence to the contrary, that something better awaits us if we have the courage to reach out for it and fight for it.’

  Cass was really stoked by the story. She said, ‘I need more copies so I can show all my doctors! Makes me want to cry every time I read it. Pre-cute.’ (For the over-20s, ‘pre-cute’ translates to ‘pretty cute’.)

  The magazine also opened up another amazing opportunity for me. On one of the pages there was an ad for an upcoming Sony Foundation You Can fundraising event in Melbourne billed as ‘A Night with Alessandro Del Piero’. I’d grown up idolising this amazing Italian footballer, acknowledged as one of the best players in the world. I didn’t hesitate to call the Foundation and ask if there was any way I could be involved. As it happened, they had been looking for someone to speak about the importance of You Can’s work. Perfect!

  Cass had lots of different check-ups and appointments in the lead-up to surgery. I would text asking how she was going and she would generally reply saying everything was fine but on February 11 she texted, AH, SO OVER IT. JUST WANT TO CRAWL INTO A BALL AND BE LEFT ALONE.

  I texted back, WELL, I WANT TO CRAWL INTO A BALL TO BE THERE WITH YOU …

  Back came the message, YOU ALWAYS SEEM TO MAKE ME SMILE. GOOD TRY, MATE :D HA HA.

  Before she had first been diagnosed, Cass used to love to play netball and would talk about how much she wanted to get back into it once she could walk better. Another thing she was looking forward to was having a pie from a famed bakery in a little town called Robertson, about 40 minutes’ drive away up and over the escarpment. These simple dreams were out of her reach right now, but the hope was that the surgery would bring them back into the realm of possibility.

  The evening before her operation I texted her:

  GOOD LUCK TOMORROW, SENDING ALL MY
LOVE. YOU’RE IN GOOD HANDS. AFTER THIS, FIRST THING WE’RE GOING TO DO IS GO TO THAT PIE SHOP YOU’VE ALWAYS WANTED TO VISIT, THEN WE CAN DO THAT TENNIS SET YOU’VE BEEN TALKING ABOUT, THEN WE’LL GO TO OUR SECRET SPOT. FOR ME TO DO THIS WITH YOU IS BLISS <3. ALWAYS MISS YOU.

  From her Sydney hospital bed she wrote back: AWWWW, JASE, YOU BIG CUTIE, THAT’S SO NICE. THANKS FOR EVERYTHING <3 I’M GOING TO KICK YOUR ASS IN TENNIS BY THE WAY.

  Two hours later she texted again: BY THE WAY FORGOT TO SAY GOODNIGHT, AND GOOD LUCK WITH WRITING YOUR SPEECH TOMORROW, SPUNKY.

  That one really got to me. Here I was lying awake, worrying about how Cass would come out of yet another risky operation to the brain – the third she had endured in less than three years – and instead of freaking out or crying herself to sleep, she was thinking about others. I hadn’t known what selflessness looked like before I met Cass.

  On February 15, Dad and I went to the Prince of Wales Hospital to see Cass. She was fragile and sore, but it was like a miracle: she could talk clearly again and they’d got her up for a few steps and she’d been able to walk. Even though it was a day late, I took her a Valentine’s Day gift of a single red rose, which she accepted. On a sillier note, I also gave her a battery-operated dancing monkey. I thought the way its butt jiggled when it danced would make her giggle and it did – it made Gloria, Joe and my dad laugh, too. Cass loved it so much that she got me to change its position on her bedside cabinet to give her a better view of that dancing backside.