Kirsty Wickens

My son Mason was diagnosed with a rhabdoid tumour on 1 August 2012 when he was five months old.

Our story started about a week before then when I noticed that he would throw himself and arch his back while feeding. Even as a young mum with my first child, I knew this wasn't normal. I took him to our family GP, who has known me since I was six, and expected him to say that Mason had reflux or something else minor. I wish it had been that.

He looked Mason over and the last thing he did was feel his stomach. He stood there for a while and asked me to come over and feel it. I asked him, "What is it?" He looked at me and said that he wasn't sure but that I should take Mason to the children's hospital. I said "Okay sure, do I need a referral or make an appointment?" and he replied, "No, go right now." My husband works night shifts so I drove home to pick him up, he'd only had about three hours of sleep, and together we went to the hospital. My husband and I didn't speak and couldn't look at each other in the car; we knew something bad was about to happen.

The Emergency room was quiet that day so we were seen to within five minutes. It didn't take long for the Head of Emergency to tell us that Mason had a tumour, they weren't sure if it was attached to his kidney or his liver, but he would need surgery and 10 weeks of chemotherapy. We were shocked and devastated. You never think your five-month old is going to need surgery and chemotherapy.

I think about adults having cancer, but not tiny babies. He was so small and young, and there is nothing that he could have done to cause this. It was so unfair. I was so careful when I was pregnant too so we couldn't believe that this was happening to him.

The next day Mason was put under for his first of many general anaesthetics and had a CT scan that revealed the large tumour was attached to his kidney. The day after that (my 23rd birthday) we handed our baby over to the surgeons to remove the tumour as well as his right kidney.

Five days after the diagnosis they had the pathology results back, this was my dad's birthday. My husband and I walked into a room with about 15 staff – doctors, surgeons, nurses, social workers, team leaders – and were told the horrible news. The tumour wasn't what they had originally thought, it was worse. It was a rare and aggressive type of cancer called rhabdoid tumour and Mason would need 30 weeks of chemotherapy (instead of 10) and six days of radiation, starting the following week. Thirty weeks from the start date would be Mason's first birthday.

They said that they would try their best, they never gave up, but they definitely prepared us for the worst. Because this type of cancer is usually secondary, he had to have MRI scans of his brain, bone scans and more CT scans to ensure that the cancer wasn't present anywhere else – thankfully it wasn't. We were told that it is genetic in 50% of cases but through genetic testing we found out that his isn't. It was just horrible luck.

After the meeting I walked back into the room where Mason was playing with my sister and just looked at him giggling and laughing. He looked so healthy and happy, especially now that the mass had been removed from his stomach. I couldn't believe what they were saying was true. I was thinking, there is no chance that he won't make it.

I had thought preparing Mason for surgery was the hard part and had been relieved when they said that had gone well. But it turns out the hard part was only just beginning. We kept being told that he was the perfect age for treatment which I couldn't believe, he was just a baby! But as Mason underwent his 30 weeks of chemotherapy, he learnt to sit, crawl, stand and walk. It was much harder to keep a moving toddler attached to a chemo pole than it was a baby. And it's better now that he doesn't really remember it.

He had a Hickman line [catheter] inserted which made the chemotherapy a lot easier, it meant the nurses didn't have to deal with needles and veins every day. I didn't want it touching his bare skin so I cut holes in all of his singlets and shirts so it would poke through. He had that Hickman line for the whole 10 months. For the first six days, we went from radiation in the morning to chemotherapy in the afternoon. I cried, and still cry, every time I hold my son until he goes limp and watch the nurses take his tiny body into the room with these enormous machines around him. Some days we'd be at the hospital for 12 hours – they were long days.

Mason handled his treatment like a champion. He had one really bad infection in the Hickman line, but luckily it was treatable. I also had to give him the anti-nausea medication on the clock otherwise he would projectile vomit everywhere, which would frighten him and us because he couldn't breathe. The treatment gave him really bad nappy rash, with layers of skin off his backside. But thankfully special creams helped to soothe this.

I was so lucky to have my husband or a family member come with me every day to the hospital. I never left Mason the entire time. Sometimes my husband would get off work, come to the hospital with us and not sleep for 36 hours. My parents would make me food and bring it to the hospital, as well as spare changes of clothes and anything else that I needed.

In May 2013 Mason completed his treatment. Because he had an aggressive cancer, he needed ultrasounds and x-rays every six months to keep an eye on it all. He loved our oncologist though, and took her flowers and makes her jelly, so he wasn't bothered by these appointments.

And now Mason has reached five years cancer-clear, which is an amazing milestone!

He's getting ready to start school next year and he's Melbourne Storm's number one fan – any chance he can get to tackle or score a try, he'll do it.

He's energetic, loving, caring and crazy, all wrapped up in a gorgeous little boy. We are so proud of him.