In their own words: How a Perth family ‘played the card’ fate dealt

It was supposed to be the trip of a lifetime: a father and his 16-year-old son trekking the Kokoda Track as a rite of passage. Instead, an emergency unfolded, plunging this Perth family into an unending fight for survival. Read on as David and his wife Natalie describe what has happened to their close-knit unit – and how they fight on.

David:

When you have your children, you never imagine in your wildest dreams that you will be helping them hike for five hours out of jungle in a third-world country with a five-centimetre tumour in their cerebellum.

David and Fergus Egerton-Warburton.

Yet this was the first day of what has become our new life.

Nat and I have the pleasure of having three wonderful sons, Harrison who is 22, Crawford, who is 20, and Fergus. We live an enjoyable and highly active life, yet not dissimilar to most families living in Australia today.

As part of our families’ rites-of-passage tradition, I train with and hike the Kokoda Track with our sons on the year they turn 16. It is both a physically and mentally challenging adventure that we see as an important stepping stone to their journey into manhood.

This year, it was Fergus’ turn. I had been training with him every weekend in the hills for four months. So, on Thursday, April the 14th, we flew to Papua New Guinea to embark on the adventure of a lifetime, walking 160 kilometres over the Owen Stanley ranges for the next 10 days.

Fergus woke up 6am on day one and was throwing up. I thought he had eaten or drunk something the night before that made him sick (this is quite easy to do in PNG) so we got him an anti-nausea pill and set off to Owers Corner to start the trek.

On the way down the first hill to the Goldy River, he was tripping, and his legs were like he was drunk, he then started complaining of double vision. We thought he had heat stroke and were soaking him in creeks as we crossed them.

But by the next morning, he was not any better and could not hold down his food. We decided to turn around with our guides and hike back out for five hours to the start.

We got back to the Pacific International Hospital, and this is where our real adventure started.

Natalie:

Back home, I was oblivious to the emergency that was unfolding in PNG with Fergus and David.

On the Friday, Crawford had flown home from his gap year in Canada and on Saturday we were at a surprise welcome home party for him.

Unbeknown to me, David had been trying to get hold of me. He finally got through to Crawford and said I needed to call – something was up with Fergus.

At that stage, we had no idea what was wrong with Fergus. The first thing I did was get into my usual “operations-happy” mode, called the insurance company to put them on standby.

David and Fergus Egerton-Warburton.

Over the next 48 hours, Sue the insurer’s nurse would go on to become my guardian angel. She played a major part organising tests in the PNG hospital and getting Fergus home safely.

By the Monday night the call finally came through from David, Fergus’s CT scan results were in – he had a brain tumour in the cerebellum. We were devastated.

Due to the pressure the tumour was placing on Fergus’ brain, a commercial flight home was out of the question. We spent the next four days liaising with the insurers organising to medivac him home.

On Friday, April 21, David and Fergus flew home and arrived safely at 5pm. We were briefed in Perth Children’s Hospital emergency department by the neurosurgeons about the extreme severity of the tumour and told there was no time to waste; the tumour would be removed first thing Monday morning.

That night, Fergus was admitted to level four at PCH.

Monday came around very quickly, and scarily we said goodbye to Fergus and then began a long nine hours of waiting. Luckily for David and I, our dear friend, Martine, insisted we play the board game called Sequence. We played it over and over – it turned out to be the best stress relief ever.

Over the Saturday and Sunday, Natalie and David tried to maintain normalcy for Fergus and surrounded him with friends, family, and lots of love.

Our first introduction to Ronald McDonald House on Level 5 at PCH came when Kylie, our clinical nurse, said once Fergus was out of surgery, he would be high risk and in intensive care for two to three days. We would need to be close at all times and had been put on a wait list to stay on level 5.

Later in the day, Sarah, the manager of RMHC WA on level 5, came to see us and said we had been granted a room for as long as he was in ICU. Although we tried to say we lived so close by and felt it unfair to take the spot from more needy families, she insisted level 5 was for rural and city families. For this, we will be forever grateful.

This meant one of us could always be with Fergus whilst the other rested on level 5. Friends and family were also able to visit and comfort us and we were still close by to Fergus if we needed to go urgently.

The RMHC WA volunteers made us cuppas, cleaned up after us and provided us with meals and were great at listening. They are affectionately known as the Blue Angels.

Nothing could have prepared us for the boy we saw nine hours later in ICU.

One of the side-effects of having a tumour removed from your cerebellum is cerebellar mutism, also known as posterior fossa syndrome. The symptoms include reduced or absent speech, irritability, low muscle tone, unsteadiness and reduced coordination and the inability to coordinate voluntary movements. Fergus developed all these symptoms.

Post-op was confronting for the whole family.

Fergus was in extreme post-op pain, could not talk, could not move his right side, thrashed in bed for two months and had horrendous bruising all over his body.

We constantly worried about seizures. He was in extreme pain all the time and couldn’t talk. It was heartbreaking to watch and at times we felt lost on how to help him. Fergus lost 13 kilos and became very frail. He was dependent on 24/7 care.

When Fergus was able to start rehab, it was so painful for him, and for us to watch.

One of my darkest days was early on in physio watching my once highly active, gorgeous boy trying to hold a ball and couldn’t. He now only had the strength and mobility of a newborn. It became very real that day that we had a long road ahead.

David:

Within two weeks of surgery, we were starting to get the full picture of what we were facing. We started to meet the large team Fergus would need to help him through the next eight months.

Having a child with cancer like Fergus’ is a full-time job for one parent for at least 12 months. On top of this, Fergus had started Year 11. He has not been able to continue with schooling.

Fergus Egerton-Warburton with his older brothers.

The teachers at PCH have been working with Fergus, us, and his school right from the start. He now has a path forward for his schooling and has a strategy to try getting into veterinary science in a few years’ time.

When he is well enough, he attends four online tutoring sessions per week in preparation for Year 12 next year.

Education is one of the things that gets interrupted when a child gets extremely ill. It not only affects the ill child on the ward, but if they have young siblings, who now must move close to the hospital full time with their parents, their education also gets interrupted. This where the PCH School and charities such as RMHC WA step in and pick up the baton.

Natalie:

Like all the parents we meet in the oncology ward, we had to quickly decide how we were going to have to adapt our life around our new reality. We own and manage a company with 20 staff and thousands of customers who rely on us. We were lucky as our other two sons are adults. They were able to help us and did not need our care, yet at the same time we worried about the life and mental impact this would have on them.

David and I made a few quick decisions. We decided to rotate daily, one person at work and one person at hospital with Fergus. This way, Fergus always had our focus 24/7 and an advocate present.

We fully briefed our staff and gave them 100 per cent clarity of our lack of availability over the next eight months. They were great and stepped up to the plate and our company has not missed a beat – we are very grateful to them.

Natalie and David told their older boys not to put their lives on hold.

Crawford found work cooking in a high-quality restaurant while planning to move to Melbourne in 2024 to study, plus his girlfriend, Britt, moved over from Canada and lived with us. Harry finished uni, moved to Victoria to work in the snow and is moving to Japan to work and travel. Life goes on.

Not all families are so lucky; usually one partner must quit their job, forcing the family to live on one income, and if they are from the regions, one partner needs to stay in or close to the hospital and the other must go back to work and visit when they can.

We are truly fortunate. We live close to the hospital and work, so it is easy for us to go to home and work and rotate. We also have an amazing friend and family network who picked us up and supported us: from cheer squad groups on WhatsApp to a group of 38 friends who gathered to cook lunch and dinner for our family for four months. We will be forever grateful to all of them.

David:

To sustain yourself and your child along this long journey, you need to take the small wins. It is a physical and emotional rollercoaster.

We were elated when on May 27, just over one month after his surgery, Fergus uttered his first words because he may not have talked again.

Fergus completed his long and gruelling radiotherapy on July 4.

That same day he decided to remove his nasogastric tube and start eating real food for the first time.

He regained movement on the right side of his body. It all started one night when watching a Fremantle Dockers game. He can walk with assistance. He never lost his sense of humour.

Before he could open his eyes or talk, he would flip staff the bird if he was unhappy or in pain (everyone was excited and said, “he is still in there”.)

He named his tumour Turmeric and asked his surgeon if he could have it back in a jar.

He likes to joke that if his parents don’t do what he wants, he will pull out the cancer or the chemo card.

As he is in a wheelchair at the moment, he also says that we get better parking spots because of him.

He has a call bell around his neck at home and every now and then, he will push it and make you walk the length of the house, just to show you a funny meme on his phone.

You are exhausted all the time. When you are in hospital with your child, you are lucky to get two hours of solid sleep in a row.

Fergus always has a smile for everyone.

Natalie:

The most common question we get is: how do you do it?

One of the brutal truths David and I have learnt running a company for 26 years is that hope is not a strategy. Life does not care for your plans or wishes. It does not consider how busy or tired you are. It just is. We have learnt over time to accept the cards life deals us and play them the best we can. Worry or stress distracts you from the job you need to do. It drains the very finite energy you need to fight the fight.

As parents, we all feel our children’s pain, but they also feel ours. If we worry or are despondent or pessimistic in any way, that will affect Fergus. And we believe that happy, positive children recover quicker than ones that worry.

We meet lots of parents in the hospital in a similar boat to us. All of them have managed to find a strength and resilience they did not know they had before their tragic event.

Our answer to the people that ask is you would cope just fine. We rarely know what we are capable of until the universe asks it of us.

David:

Life dealt Fergus and our family a tough blow, but we believe that life only gives you what you can handle, and we can handle this.

Natalie and David Egerton-Warburton.

Our son is in one of the best children’s hospitals in the world with some of the world’s best doctors, nurses and allied health professionals.

We have been supported by many amazing charities who are dedicated to and focused on easing the burden on kids and families.

We have an incredible friend and family network who have been with us every day from the beginning.

Ronald McDonald House picked us and supported us when the world we knew was crumbling around us. We are an example of the type of family they can help beyond just regional families with your support.

We are only part way through our journey, but we will be forever grateful for PCH, friends and family and charities like RMHC WA who have supported us along the way.

Natalie and David Egerton-Warburton have told their story to raise awareness of the role Ronald McDonald House plays in the journeys of sick children and youths.

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