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My Story

I was about to start year 6. In every way, a normal 11 year old. It started with a rash on my torso, which doctors deemed viral and gave me steroid cream to treat. Without improvement, my symptoms progressed to a lazy eye, double vision and skin peeling from hands and feet – again – a suspected viral infection. Again, no improvement. I had lost half my body weight, unable to keep any food down. I remained in this state for over a month before my symptoms progressed further.

In March 1999, at a family lunch one of my cousins remarked “hey look, now she’s talking like a pirate to match her wonky eye” (what’s a little bulling between family). Mum rushed me to hospital, my lazy eye had become full paralysis of the right side of my face.

After scans and tests in the ER it was determined that I was in complete kidney failure, which they couldn’t treat in Canberra. – I was sent by air ambulance to Sydney Children’s Hospital that night (in an electrical storm).

The bits in the middle are somewhat fuzzy, but the way my oncologist tells it (and it’s his favourite story to tell at conferences) is: (and relayed it once again last week)

He was walking down the corridor of the hospital when the nephrologist (kidney doctor) looking after me crossed paths. He was holding my most recent scans, and asked for his opinion on something. This was then followed by “I think you need to send her to see me”.

There was a large mass in my chest (*I learnt at my recent visit that it was the size of a rockmelon), indicative of leukaemia. I remember the doctors coming into my room, sitting on my bed and taking my hand and asking “do you know what cancer is?”

I was diagnosed with Acute Lymphoblastic Leukaemia (ALL). A type of cancer that affects the blood and bone marrow. ALL is characterised by an overproduction of immature white blood cells, called lymphoblasts or leukaemic blasts. Because the bone marrow is unable to make adequate numbers of red cells, normal white cells and platelets, people with ALL become more susceptible to anaemia, recurrent infections, and to bruising and bleeding easily. The blast cells can then spill out of the bone marrow into the bloodstream and accumulate in various organs including the lymph nodes (glands), spleen, liver and central nervous system (brain and spinal cord).

If I had not been diagnosed then, the specialists suspected that I would not have seen out the month, probably not even the week. I started chemo on a dialysis machine. At the same time, I underwent radiation therapy on my spine and head, as the cancer had reached my bone marrow. I experience every side effect in the book and invented a few of my own. I became wheel chair bound and unable to manage more than a few steps on my own due to one of the treating drugs. I lost my hair – sort of. I refused to shave it so it just fell out on its own except for a few stubborn tufts here and there. I was in hospital in Sydney for 2 months. Coming from a close family, this put a great amount of strain on us all. I hated being away from my siblings, mum couldn’t work because she was in Sydney with me. My brother and sister were 18 and 20 at the time and made regular road trips with their friends and other family members to visit, but it wasn’t the same. I wanted to go home.

Finally, after much begging and pleading the doctors released me to go home, on the proviso that I would go straight to Canberra Hospital if I spiked a temperature, I was home for 48 hours. I then spent the rest of May in ICU on the children’s ward at TCH. That included my 12^th birthday. My teacher brought a bunch of my friends in and we had a party in the common room. But it still sucked.

After 2 (and bit, due to delays) years of treatment, on June 15, 2001 I was officially in remission. Cancer free. I had missed all of Year 6, except graduation and only attended Year 7 full time for the last term. But I was cancer free.

As part of routine follow up, a mass was discovered in my thyroid in 2004. I requested that it be removed instead of performing additional tests – my previous experience taught me if something could go wrong, it would. The doctors in Canberra refused. I went to Sydney, my paediatric oncologist agreed. Having the top children’s oncologist in Australia has its perks – he knew a guy. They removed my thyroid, good thing too. What the technicians thought was cancer, was not – but there was cancer elsewhere in my thyroid. They performed a complete thyroidectomy and removed one parathyroid. I then had radioactive iodine treatment to kill off any remaining cells (and to become a super hero) and then I was once again cancer free. And touch wood, will remain that way.

Please give generously to help prevent this from being someone else’s story. Its time a cure was found.

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