Abbie’s Story

“The beginning of 2009 was the beginning of the next stage of my life. I had just graduated high school, had a job that I enjoyed, and I was just starting to taste the new-found freedom that a university degree offered. Not only that but the count-down to my 18th birthday was starting to get smaller and soon I would be able to go out and party with all my friends. And then all that was taken away from me, when I was diagnosed with Ewing’s Sarcoma on 18th May 2009.

Around Easter, I started to feel pain in the lower part of my back. I had previously felt this pain before, but it never occurred to me to see a doctor to get it checked out. The Easter long-weekend led to a weekend of intense pain. After a couple of days, the pain just disappeared and so I just forgot about it, after all, nothing too bad ever happened to ‘people like me’. It only took another week for the pain to come back, but this time I didn’t waste a second before going to see a doctor, the pain was that bad. After an X-ray and a follow-up CT scan I was told that I had a tumour in my left pelvis. Cancer had not even occurred to me in the entire lead up to this, so it came as a massive shock.

I saw a surgeon the very next day, who arranged the many tests including an MRI, PET scan and bone biopsy that would ultimately diagnose me with a rare and aggressive form of bone cancer, Ewing’s Sarcoma, at the age of 17. My primary tumour was in my left pelvis, but by the time we caught it, it had metastasised to the other side of my pelvis, my spine, ribs, lymph nodes and also to my lungs.

It didn't feel real to me at all. People my age didn't get cancer. Surely they could still be wrong? I went into shock, nothing sank in. Questions run through your head, but you don't want to ask them because it makes it seem real. The doctor that I had at the time, told me to write any questions that I had down on paper when I was at home and could think of them and then bring that piece of paper to my next appointment. It would help to organise my thoughts. I even went back to uni, after being diagnosed, and sitting through my lectures it felt like nothing was different.

Afterwards, however, with more appointments, blood tests, a PET scan and the first of many days of chemo to come, all within a week, it started to sink in. Suddenly I had to replace uni lectures and tutorials with doctor’s appointments, hanging out with friends for spending time with nurses in hospital and, instead of going to work, I went to chemo. I was sentenced to 8 months of chemo, including 2 months of radiation therapy as well.

Being diagnosed with cancer takes all the control and choice out of your life: you can be treated like a kid who doesn't understand anything, and can feel this horrible sphere of isolation. You are suddenly stuck getting treatment, having nurses doing everything for you and the decisions that you made just a few months ago, like “what should I do today”, are taken out of your hands completely.  But I had access to an amazing medical team. I was diagnosed at the age of 17, a child under the eyes of the law, but I was taken seriously by my doctor and treated like an adult. Any information he had he directed it to me, not to my parents. Teenagers really do understand more of what is going on than many people give them credit for, and we have a right to know what is happening. That is why when my doctor gave ME the choice when he could, I really appreciated it.

There is a lot of isolation when you are living with cancer. You are surrounded by nurses, doctors, friends and family but you still feel alone. Friends, through no fault of their own, often don’t know how to act. They don’t know what to say for fear of saying the wrong thing and sometimes to avoid that uncertainty – they just avoid you. They weren’t to know that there really is no ‘right’ or ‘wrong’ thing to say, but just being there for me as a friend and being ‘normal’ was all it took.

3 months into my treatment, through a stroke of luck, I met another young person going through a similar thing. It was unbelievable how much that helped me realise I wasn’t alone, and I was not the only one who had to go through these things.  Joining CanTeen provided me with an opportunity to fit in and just be normal again. It became a place that I could just be myself and I could talk to people who understood and didn’t treat me any differently, and because of that I no longer felt that I was ‘the girl with cancer'.  The flexibility meant that even though I was in treatment, I could still participate in some activities and meet other people along the way, something that helped make me feel that my life could, and would, get back to normal!

I went into remission at the beginning of January 2010, and my life was looking like it was back on track again. At the end of August 2010, six days before I was due to go to Paris for a week thanks to the Make a Wish Foundation, I found out that I had relapsed. This time it had gotten back into my bones as well as my lungs and liver. As I had been treated with chemo recently, the best course of treatment I could have was to try a new insulin growth factor receptor trial drug in its first stage of patient testing that had only just come over to Perth from Melbourne.

Once I started the trial, I started to get very nauseous and was in a lot of pain. It was found that I had a tumour growing in my skull which was making me so sick. I had 25 days of radiation therapy to my head, alongside being on the trial. The radiation cleared my head, but after only 57 days of being on the trial, we found out that it wasn’t working.

I was then due to go onto chemotherapy as enough time had passed to make it more effective, but by then the cancer cells had gotten into my bone marrow and were attacking and killing my platelets. As I couldn’t go on any IV chemo with such a low platelet count, I was put on mild chemo with the intention of cleaning out my bone marrow in preparation for the IV chemo. The mild chemo, however, responded so well that it started to attack all the cancer in my body and I was once again on my way to recovery.”

Throughout her life, Abbie looked to help others, and she had planned to be a forensic psychologist. Her change in personal circumstances led her to channel her passion for making a difference into advocacy for those diagnosed with cancer, particularly in her age group, being involved in CanTeen; a member on a Patient Consult group for ways to improve survival rates in the Adult and Young Adolescent age group; speaking to medical students about appropriate treatment of Adult and Young Adolescent cancer patients and developing her own fundraising ideas to increase awareness about sarcoma in the community and to fund sarcoma research: a cause in which she passionately believed.

Even though the cancer returned after three months of the mild chemo, this did not stop Abbie’s passion for wanting to help others in the future who were to be diagnosed with sarcoma, and she channelled her remaining energy between having as much fun as possible and developing her plans to improve sarcoma awareness and research into sarcoma. She said: “It can’t help me, but it can help someone else. What happened to me was for a reason; maybe this is the reason?”

She spent the last three weeks of her life at home with the people she cared about most and who loved her. She passed away very peacefully and with dignity, on August 24th 2011, three weeks after her twentieth birthday, at home as she had wanted, her radiant smile and sense of humour always present; an inspiration to all who knew her and watched the way in which she dealt with what life had thrown at her: with grace, endless courage and determination that something positive must come out of her personal experience.