Fighting for My Brother

Carly shares her story of losing Stephen to leukaemia

Carly is an exceptional young woman, who was first introduced to the Children’s Cancer Foundation through her mum, Andrea. Like her mum, Carly continues to be one of our most prominent advocates and supporters in honour of her brother, Stephen, who lost his battle with leukaemia. Over the years, Carly has always been more than willing to volunteer her time to help the Foundation in any way she can.

Normal family life disrupted and changed forever.

At the end of my first year of primary school in 1996, my older brother Stephen started complaining about sore knees. Of course, sibling rivalry kicked in, and I just thought he was an attention-seeker.

The thought never crossed my mind that he could genuinely be sick, let alone have cancer. I don’t remember a whole lot following Stephen’s initial diagnosis of leukaemia, until his second relapse. I was very young and didn’t fully understand what was going on. Life seemed to go on more or less as usual, except that some days I would go to the hospital with Mum and Stephen.

It was later, at the end of Grade Four when things changed. Stephen was back on chemotherapy, and he and Mum were at the hospital a lot, often for several days. When I visited, I would spend time in the Art Therapy room while Stephen was on the ward at Monash Medical Centre; a fond memory.

During my Grade 6 year, we started preparing for Stephen to go to The Royal Children’s Hospital for a Bone Marrow Transplant. We had a room at Ronald McDonald House, so mum and dad could better manage being with Stephen, while also maintaining a somewhat normal life for me. Some of my more painful memories from Stephen’s time were there.

Stephen’s health deteriorated shortly after the transplant, landing him in ICU for about a week until the nurses were able to get him well enough to go back to his room.

When ICU and cancer wards become a second home

I remember visiting Stephen after his transplant and to my delight, he was playing his guitar, which was something he loved but hadn’t been well enough to do since his admission. We played computer games together, and Stephen was joking around and seemed quite happy.

It was at this moment I thought to myself “Oh my gosh! It worked, he’s getting better!” But, my optimism was challenged when he was placed back in ICU, and this time it was more serious, as he contracted Graft versus Host Disease, which affected his vital organs. I remember leaving the hospital one day and asking dad: “He’s going to get better, right? Like last time?” Dad’s response was far from reassuring. It started to sink in the next day when I saw just how unwell Stephen was, that he might not make it. He was weak and had to communicate by pointing to letters on a board, unable to speak due to a tube down his throat, helping him breathe.

I burst into tears, and Stephen spelt out: “Why is Carly crying?” It was at this moment that I realised my hopes of him coming home would never eventuate.

I received the earth-shattering news in the following days by Dr Keith Waters, Stephen’s Oncologist. He pulled me aside into a small room and told me this was the end of the road for Stephen.  

As an 11-year-old, I found it hard to process Stephen’s death, and I kept my emotions close to my chest for many years. I can understand how many parents – who go through years of the first diagnosis, then hospital appointments, procedures, relapse and the grittier final stages – would want to distance themselves from any reminders of this long, hellish nightmare. It would be simpler to wipe your hands clean from any association with the disease, put it all in the past, try to forget and move on with your life.

Motivation to make a difference for others

I am so proud that my mum has never turned her back on helping other parents in the same boat and have always admired her dedication to the Children’s Cancer Foundation which spans more than 18 years now.

As I grew up, I became more emotionally equipped to process everything, and I knew that I too wanted to help. I started helping mum count the money and raffle tickets from the yearly fundraising events. I later volunteered at The Million Dollar Lunch, the annual fundraiser of the Children’s Cancer Foundation. I cherished the bonding time with mum and doing something to help other children and families undergoing their battle with cancer. I somehow felt as if it brought us closer to Stephen.

I enjoyed being a part of The Million Dollar Lunch so much that I decided to put it on my annual calendar and increase my involvement in 2015. It was great to be a part of the team and see all our hard work come to fruition when The Million Dollar Lunch 2015 raised more than $2 million.

In 2016, I began to volunteer more broadly with the Children’s Cancer Foundation, helping out with administration and other Foundation fundraisers, such as the Murray to Moyne. In April 2016, I was offered a 6-month contract as the Marketing and Administration Assistant for The Million Dollar Lunch. It was a rewarding experience, and I gained valuable industry experience as a new marketing and communications graduate.

I continue to volunteer my time with the Foundation because even though we may have lost our battle with cancer, we will never concede defeat and will continue to fight in Stephen’s honour.

Thank you Carly for sharing your story with us.