"My son was just nine when he showed me some lumps in his neck."

I am a 43-year-old mother of four boys; Henry, Angus, Noah and Darcy.

A lot of people struggle to remember which one is which – including me at times. It’s helpful that the first initial of their names spell HAND.

The boys are all active, noisy and messy. They are very different to each other, but they get along well. My husband Steve and I have managed to work while supporting their education and far too many extra-curricular activities each school term. I think it would be fair to say that we are never bored.

However, in 2013 we would have wished for boredom. Our second son Angus, or the A in HAND, showed me some lumps in his neck.

He was nine-years-old at the time. Worried, like all mothers would be, we went straight to our family GP who arranged blood tests. The tests were completely normal, and Angus was really well, he had heaps of energy, and was playing footy. Our GP thought it likely that he had some viral exposure.

She said those lumps should go down, and to come back if they don’t.

But, those lumps were persistent little buggers. So back we went. More blood tests – still normal. An ultra-sound – inconclusive. Angus was referred to the Kids Hospital at Randwick to have one of the nodes removed. We were assured it was “probably nothing” and it was just cautionary.

I can replay that day in my head like a movie, and I probably will for the rest of my life. The surgeon smiled at us as she came into the clinic. Steve and I looked at each other and breathed a sigh of relief. We were deceived by the belief a smile meant we were fine. That smile signalled our lives would change forever.

Angus was diagnosed with Classical Hodgkin Lymphoma – nodular sclerosing type. Soon after, the surgeon introduced us to Paediatric Oncologist Toby Trahair – a man we have, unfortunately or not, come to know very, very well.

At this stage, I wasn’t actually sure if lymphoma meant cancer. Judging from the ghost-like face of my husband I thought it must be, and my heart collapsed when I saw Angus, our most engaged, inquisitive child, completely distracted and unaware.

Toby said some important things to us that day. He told us that Angus' cancer was treatable - and that cure was achievable. As we were driving home, trying to work out what to do next, Steve and I both reflected on being parents who were given a different message. Imagine incurable, not treatable. That was unthinkable.

I went home, called my dearest friends and family, and got on with it.

The next 10 weeks were a blur, we went back to work. At that time, I was a part-time lawyer in a commercial firm in Sydney, and Steve a self-employed physiotherapist. The boys went back to school and I naively believed we could continue as normal. This was before I knew what a round of chemotherapy would be like.

For Angus' first oncology appointment I phoned into the consultation from work. Steve was with him when Toby outlined the treatment. It was terrifying. I managed to lose all of the work I did that day - didn't save a thing. Knowing I couldn't be absent any more I asked my boss for six months leave without pay.

The next few months was a montage of chemotherapy cocktails, and friends and family caring for our other boys while we spent endless nights in the hospital with four other kids and their parents.

It was a club none of us wished to be a part of, but at least we didn't feel alone.

The first good news came in October 2013 when there were no signs of active cancer. Though there was relief, there was not the euphoria I expected. I think we were all raw and exhausted. The odds that the cancer would not return were over 90%. We were hoping we were done.

In 2014 we got on with life. Shaken with the new-found appreciation of mortality we took the boys on a month-long trip in the Northern Territory in a motor home. Yes, six of us, in a motor home. It was brilliant!

Unfortunately, our happy family was struck again in February 2015 when Angus found lumps in his neck again. We thought they were from a cold he carried through January.

When the doctor left the room and came back with four other doctors we knew we were again facing cancer. But this time the cancer was in his neck and abdomen. This time we needed much more aggressive treatment.

Vomiting, nausea, and diarrhoea – PET scans showed the only thing chemo was doing was making Angus sick. His lymphoma was progressing. Radiotherapy was the only other option which saw my little boy pinned down to a bed with a thermoplastic mask.

While the facilities are modern and the staff kind, it felt like I was letting them perform some medieval torture on my child.

Radiotherapy seemed to work but there were still some patches of active cancer we beat with an autologous stem cell transplant. We learned the drug Brentuximab was successful as a post-transplant therapy, halving the recurrence of the disease. But this drug wasn't available to Angus on the PBS because his cancer was rare. The drug was going to cost $11K+ per dose for 16 doses. And our private health care would cover none of it.

That’s when we met Rare Cancers Australia – who helped us crowdfund for this treatment through Sick or Treat. The support was overwhelming, with over $260k raised from our family and friends, my old law firm Clayton Utz and thousands of generous souls who have never met us.

Angus has now had six doses of Brentuximab, the first one was in December. His central line has been removed, and he is at high school.

This month Angus and I told our story in Canberra, when Rare Cancers Australia launched its new report Just a Little More Time. This report highlights the devastating impact rare cancers have on all Australians – but particularly our kids.

Rare cancers take the life of one child every four days, making it the number one killer of Australian children. We called for policy change to make the best treatments available for all types of cancer – I can only hope they listened.

It's important to know my family’s story is not unique. Around 950 children are diagnosed with cancer each year in Australia. Of those, 150 are either diagnosed with cancer types that have less than a 30% survival rate, or suffer relapse and are faced with a reduced chance of cure. Every parent wants the best for their child.

That usually means the best education, the best opportunities at sport or music. But for some of us it just means the best treatment.

To find out more about rare cancers visit www.rarecancers.org.au.

Listen to the entire episode of This Glorious Mess, including whether it's okay to decorate your kids' room with graffiti, and the 27 things only people without kids would say. 

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