In August last year, 5 year-old Violet had a bout of gastro. Although the vomiting lasted only a day or 2, she continued to feel sick and lethargic in the weeks following. She complained frequently of ‘feeling sick’ particularly in the mornings before school and when in the car. She’d also complain of aches and pains just like most growing kids do. I would keep her home from school after tears in the morning and then she’d be fine all day. I put it down to separation anxiety, because in general she really enjoyed school. I was studying at the time and I thought maybe I just needed to spend more time with her.
After her second lot of gastro, I took her to the GP for a check up. She was feeling fine by then and he couldn’t find anything physically wrong with her so we left it at that. Her symptoms soon returned - tired, cranky, crying, complaining of body aches, loss of appetite and constantly complaining about her stomach. Then she developed low grade fevers that completely wiped her out. I took her back to the doctor and he ran blood tests showing a low blood count (low iron) and inflammation. The viruses he tested her for all came back negative so he told us to take a stool sample.
One night, (after 7 days of fevers) I ended up taking her to emergency as she was rolling around the floor crying in pain. I explained her list of symptoms, including how it hurt her neck to look up. After many doctors poked, prodded and scratched their heads, they decided it was probably a food intolerance of some kind and they told me to take her to a gastroenterologist. I asked the senior doctor if they could give her an abdominal ultrasound and he said that unless they had a suspected diagnosis then there was no need. By then Violet was feeling OK again, they said there was nothing else they could do and I left without answers.
Our GP called us in a few days later with results of her stool sample (it took a few days to get one as she hadn’t been eating). She was positive for 2 different parasites, one of which matched all her symptoms except that she hadn’t had diarrhea which is usually the most tell-tale sign. Finally (we thought!) we had an answer. The Doctor prescribed some antibiotics and we left for a much-needed family holiday. We waited to see some improvement, but knew that it could take several courses of antibiotics to completely eradicate the parasites.
Our holiday was anything but relaxing with a sick, cranky child who had no energy to do anything or go anywhere. At the end of the week, we returned to the GP for a follow-up and ironically Violet was bouncy and happy. Perhaps the antibiotics were finally working. Our GP gave us a blood form to do a test in 2 weeks if she wasn’t completely better and told us to return if she worsened. She had now had fevers for 2.5 weeks. That weekend she was feeling sick again and her fevers spiked. I was so over the roller-coaster by that point, that I cracked. I was tired of second-guessing myself. It took getting to this point to realise that ‘enough was enough’. We needed answers.
First thing Monday morning Craig and I called our GP. He was very supportive and told us to go get a blood test and then come straight in. He sent us for a chest x-ray and then on to the hospital with the test results and a referral letter. The results were inconclusive. Once again, while we were ‘interrogated’, Violet was poked and prodded by many doctors, until one of them thought they felt something on the left side of her abdomen. Finally they sent her for an ultrasound. We returned to our ‘cubicle’ after the ultrasound and the Doctor explained that they had found a large (8cm) mass near her left kidney. “You don’t seem surprised.” the doctor said. All we could think was that we finally had some answers.
We were referred to the Lady Cilento Children’s Hospital where many tests were run over the following week. By this stage, she had deteriorated so much she could hardly walk. Her fevers continued and she was on a cocktail of pain meds. Although we now knew that it was cancer, her diagnosis shocked us. Stage 4, Neuroblastoma. An 8cm solid mass on her left adrenal gland, above her kidney that snaked alongside her major arteries. The cancer was throughout all her bones with ‘hotspots’ in her skull, legs and spine. Every ‘ache’ that she had complained about was cancer, slowly sucking the life from our precious little girl. At this stage she was given a 50% chance of survival (this was later reduced to 25%).
It’s now been 9 months since Violet’s diagnosis. She’s had 7 rounds of chemo (all of which made her incredibly sick with many extended hospital stays to treat the side effects), a 9 hour surgery to remove her primary tumour and her left kidney, 20 days of radiation to various parts of her body (also making her very ill) and a bone marrow transplant. She is currently undergoing 6 months of ‘immunotherapy’. This involves a constant rotation of a cocktail of drugs that are injected, infused and shoved down a tube with a myriad of side effects. She is hospitalised while administering some of them so they can treat the side effects with anti-convulsants, morphine and a list of others medications. She will lose her hair (again) after just starting to have it grow back. The long-term effects of these drugs are not known because they are still being trialed.
Yes, it all sounds fit for torture, but Violet’s story is just one of many. There are many other children who are worse off. It’s time to make a change. We need earlier and easier diagnosis, more effective treatments and side-effects that aren’t going to cause a secondary cancer later down the track. We need to back the researchers that have already done so much but have such a long way to go. What would your response be if it were your son or daughter?.