Renee’s Story

My life up until January 2011 was like any other typical 16-year-old. I had just finished year 10 was looking forward to starting my senior years and doing well in my HSC, I was learning to drive and had a part-time job. I was hardly ever sick and going to the doctors was exciting as I only went every two years or so.

Whilst on a holiday in Queensland my family was nagging me to get a haircut as it had been 18 months or so since I had a decent trim, I persisted in saying ‘No’ as I wanted to grow my hair as long as I could. Little did I know that I would lose it all in a matter of weeks.

Towards the end of our holiday I started to become quite ill and not my usual self, however we didn’t take much notice of it and I pushed through, still managing to go on the lethal weapon ride at Movie World.

When we got home we went to our local doctor as I was not getting any better. At first it was diagnosed as just a virus but I still didn’t improve so eventually I had a blood test. When the results came back the doctor knew it was something serious and we were told to go straight to Gosford Hospital. From there I was transferred to the oncology ward at John Hunter Children’s Hospital.

 Mum and dad then knew it was something extremely serious. I was feeling so sick at this point I don’t remember a lot of what happened.

Many tests were done to confirm the diagnoses of lymphoma and what type of lymphoma I had. A lymph node was removed from my neck which was sent away for testing and it revealed I had Anaplastic Large Cell lymphoma. At first I didn’t even realise what lymphoma was and I definately didn’t know it was a type of cancer. Once the doctor explained that I would be having chemotherapy and I would lose my hair I knew it was the unthinkable.

The idea that I could be diagnosed with cancer at such a young age seemed impossible, yet my worst fears had just come true. Why me? That is all I kept asking myself. Once the doctors knew what they were treating my treatment started immediately as I was extremely ill by this stage. I responded well to my first round of chemotherapy and started to feel better in myself. This was followed by another five rounds of chemo which involved spending one week in hospital every three weeks until May 2011.

I didn’t struggle too much with side effects from the treatment; I did develop mouth ulcers and was a bit tired. In this time I did everything I could to make sure my life could go on being as normal as possible despite losing all of my long hair. I went to school when I could as it took my mind off things and made sure I had strong relationships and did things with my friends. On the last day of my final round of chemo I walked out of the oncology ward at John Hunter and said goodbye to cancer and was looking forward to getting on with the rest of my life.

Only a few weeks later in June 2011, I developed a fever and became quite ill again. This was unusual as throughout my six rounds of chemo I remained quite well and did not develop any fevers. A PET scan then revealed the unthinkable, the lymphoma had come back. How could that have happened so quickly? I thought. It was at this stage that my doctor told me the only way to kill this disease was through an allogeneic bone marrow transplant. My family and I jumped at this idea and said ‘Yes we will do it’ even though we had no idea what it involved. We just wanted this awful disease gone!!!!

While we waited for the transplant I had chemo and steroids to get my lymphoma back into remission. This kept my lymphoma in remission but was extremely hard on my body. I did try to keep up with some normal life while waiting for the transplant and continued going to school and spending time with friends.

Finally in November 2011 I went to Sydney Children’s Hospital at Randwick to begin the transplant process. Although we were given lots of information about transplant nothing prepared us for what was ahead of us. Before the actual transplant I was given radiation and chemotherapy which was to destroy my own bone marrow and any remaining cancer cells.

On November the 28th 2011 I was given the transplant. These new cells given to me in the transplant were not from a donor but were from cord blood. The days following the transplant I felt pretty lousy with high fevers, vomiting, loss of appetite, mouth ulcers, diarrhoea the list goes on. All the time the doctors assured me this was all normal after what I had been through.

I know all of this was hard for my parents but family & friends helped us get through this. The amount of people that go out of their way to help you, even strangers, has blown us away.

I spent seven weeks in hospital and most of that time in isolation, but slowly and surely I improved. It was extremely hard being stuck in a room from such a long period of time which included Christmas Day. Of course time went slow being in hospital for such a long period of time however I tried to keep myself occupied by watching movies, using my ipad and keeping in touch with family and friends through Skype.

Finally I got to come home at the end of January 2012 and was on weekly visits to Sydney Children’s Hospital. The doctors were pleased with how the transplant went, however I still felt there was no end to this and did develop some depression. I did manage to get through this with help from some amazing people.

I look back at this time now and still don’t know how I got to that point of feeling so low but I am glad I got through it. Slowly I am getting my health back and I am continuing my follow ups at John Hunter Children’s Hospital. I have joined the local gym so I can get my physical strength back, I have also managed to get my license and have my own car, I have returned to school and enrolled in three subjects so there is not as much pressure on myself and next year I plan to go to university through alternate entry schemes. I am looking forward to the end of the year where I am going to Queensland with three friends for schoolies.

Of course I still have those days where I worry my cancer will come back but try to be as positive as possible and make the most of each day. I look at life so differently now, I am so grateful for being giving the opportunity to have that transplant, not everyone does. I believe I’ve become a stronger person, I use to be quite sensitive and delicate but going through the experience of cancer you have to become tough and I have!! I’ve beaten cancer and now whatever life throws at me I can handle.

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