My son's tummy ache turned out to be a rare and aggressive cancer - here's what I want every parent to know before it's too late
When he fell ill with an upset stomach and appeared lethargic, many parents would have just chalked it up to a benign, temporary illness.
'It would have been so easy to say it was a virus, but I just knew deep down in my gut that something was wrong,' William's mum Danielle told Daily Mail Australia.
'He was showing signs of separation anxiety, which wasn't like him, and I thought to myself, 'I really need to have this looked at and hopefully I'm just being a paranoid parent.'
Tragically, Danielle's instincts were right and a devastating diagnosis was about to turn their world upside down.
The mum-of-three took William to see their family doctor and she shared her concerns, so the doctor agreed to run a series of tests.
Two days later they returned to receive the results. 'We were told 'you need to go home and pack a bag for William and yourself - we didn't know what that meant other than we knew one of the test results showed spots on his liver.'
The family went to the Emergency department at Westmead Children's Hospital and after speaking with a doctor they met with an Oncologist.
'I remember him saying: 'I hope I'm the wrong doctor for you,' but explained that they needed to run more tests.'
Initially the team thought it was lymphoma, a cancer of the lymphatic system, and tests showed that William had several tumours throughout his body, the largest being on his liver.
'The oncologist was showing the scans and was pointing out the tumours, they were all through his body. I just kept thinking how could there be this many tumours and we didn't know and how could there be this many tumours and William didn't know,' Danielle shared as her voice began to crack.
'He went down the scan and said 'this is William's heart', he scrolled down and said, 'this is the tumour on the liver.' I asked him to scroll back up because the primary tumour was bigger than his heart. How could it be bigger than his heart?
'That is the moment that killed me.'
Yet despite learning that crushing information that would be impossible for any parent to hear, Danielle remained stoic and strong for William.
'You can't fall apart but so much happens so fast. When you've got your six-year-old who asks: 'Mum am I going to die?' — what do you say to your child in that moment? You have to protect your child and do the best you can. You just can't fall apart.'
Nearly two weeks after being admitted to hospital and after William had already started chemotherapy treatment, he was diagnosed with Neuroblastoma, a rare childhood cancer that starts in the early nerve cells of the sympathetic nervous system.
William's cancer was stage 4, high-risk and aggressive.
What followed was a gruelling series of treatments for William, including six rounds of chemotherapy, two back to back bone marrow transplants that saw him put in isolation from the public for nine long months, radiation and immunotherapy.
Around 18 months after treatment had begun, William was finally finished, but then in a cruel twist, a scan showed another tumour.
'It fell into a pattern at that point, another scan, another tumour, another scan, another tumour. This went on for a while,' Danielle said.
In January 2018 we were away on a holiday on the coast there was about 30 of us making memories together and I knew that something wasn't right. I noticed that one of his eyes had turned and he wasn't looking straight.
'We had scans booked when we got home and at that point the oncologist had asked William to stay in the waiting room and he told me to prepare myself, I knew what he was going to say.'
'He was given 6 to 8 weeks. I had prepared myself that he was palliative, and I had got to a point but everything I had read said it would be six to eight months, so I assumed that we had that time. I can't even put that into words how I felt when I heard that prognosis. Pretty much eight weeks later he passed.'
'Despite knowing what was coming in those last eight weeks, if you were around him, you wouldn't have known, people couldn't believe he was so sick, he didn't let it show,' Danielle said.
During his gruelling treatment, William was happy to share his experience with other children and families who were going through the same thing.
'He was very open and willing to talk about his experience. He talked to other children at the hospital and was very willing to advocate on what he was going through. My sister was diagnosed with breast cancer and they would talk together about it.'
Danielle and her two eldest children were inspired by William to help other children and their relatives who were battling cancer and raise funds for the Kids With Cancer charity by hosting the annual Gold Ribbon Ball.
'It gives purpose to why William was here. We would struggle to deal with something so terrible happening to us without it, so the three of us definitely use it as a healing technique and way of coping with our grief,' she said.
This month, to recognise what would have been William's 16th birthday, Danielle is raising awareness for the charity's Care Packs 4 Kids campaign.
The bespoke gift boxes contain sweet and savoury snacks, puzzles and activities and a hand-written inspirational note. The packs are offered to oncology patients each time they attend a children's hospital across Australia.
'Time in hospital is long and whether you're there for a day visit or a longer stay it's really hard to keep your child entertained. The care packs provide that bit of distraction but it also hits home that there is somebody out there that cares with the handwritten notes,' Danielle explained.
'Something so small can make a big difference and even if it's just for five minutes that the child forgets about their cancer or their treatment, it's like five years for the parents.'
Given what Danielle and her family went through, the Sydney mum is well placed to share advice to families who find themselves in a similar situation.
For those who might be going through a possible cancer diagnosis she said, 'My advice would be to advocate for your child and to voice how you feel, voice what your concerns are.'
Danielle admits it was 'hard' for her to accept help from others in the period following William's diagnosis.
'It took me a good few months to accept the support and to advocate for him and ask all of the questions. The community is incredible and there were so many lovely people there for us, I want to pay it forward.'
'I think if William was with us today he's be joining in the fundraising, he'd probably be leading it and driving it. I think he'd be proud.'
To support the Kids With Cancer or to donate to the Care Packs 4 Kids campaign, click here.
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