'For 10 hours a day, work allows me to pretend that I don’t have a child with cancer.'

It’s not very often that I speak of my feelings, but today I got asked by a friend at work if I was OK. 

She said that I looked sad in my eyes and she was worried that I was rundown. She was so worried, she suggested I needed to take time away from the workplace. 

I don’t normally tell people how I am, but I want to open up, not for sympathy or attention, but to get my feelings and worries off my chest and to let people know what goes on in this crazy world of mine.

My son has acute neuroblastoma, a rare and aggressive form of childhood cancer. 

WATCH: My family's story on A Current Affair. Post continues after video.

We found out when he was six weeks old, after a catastrophic birth that left my little boy gasping for air due to a rare condition called laryngomalacia that affects his breathing. 

After two major operations, a supraglottoplasty and tracheostomy, they found a tumour in his neck.  

Since then his little body has been put through two rounds of chemotherapy and in March we received a glimmer of good news - his tumour remains inactive and hasn’t grown. 

But we’re far from through this nightmare. Eli was only born 10 months ago, on August 19, 2019, but that feels like a lifetime ago.

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Eli was born in August 2019, and has already lived through so much. Image: Supplied. 

Having a son with cancer is by far the hardest challenge I’ve faced in my life. Even though Eli has been given a good prognosis by his doctors, I live each day in fear that I might one day lose my son. 

I hate that it’s not safe to remove Eli’s tumour. Every day I live in fear that his cancer may spread and that cancer may take my little boy away from me. 

Every night I’m woken by the noise of Eli struggling to breathe, choking on his own saliva, I jump from my bed and suction all the gunk from his throat and chest, then I then lay awake for hours because my anxiety won’t let me sleep.

I lay there and listen to every breath, just to know he is OK. My job as a parent is to protect my children, but in so many ways I physically can’t protect Eli from his illnesses and this eats away at me constantly.

I dream of the day that we are told that Eli is cancer-free and he will no longer need the tracheostomy to breathe and know that he will get to live the life of a ‘normal boy’. I can’t wait for Eli to be able to return to Sydney Children’s Hospital oncology ward to ‘ring the bell’ symbolising the end of his treatment.

Some days the pressure is just too much and sadly some days my relationship with my wife and children suffers. Every moment of every day I try to be the best person that I can be, I try to remain strong for them, but sometimes it’s really hard. Sometimes my anxiety gets that bad that I become extremely moody and I’ve even lost my temper - this is at people I love, and for that, I’m so ashamed of myself.

I’m so lucky to have the support of my beautiful friends and family, they have got me through some dark times, and rallied around my other kids when it’s been too hard for wife Jenny and me to be there for them.

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In November 2019 we finally returned home after 94 days at Ronald McDonald House at Randwick. Image: Supplied.

I have a great job that mostly supports my family’s needs. In so many ways, I’m such a lucky guy, but sometimes I feel broken and feel that I’m the unluckiest guy on the earth. I love to go to work, not to run away from my family responsibilities, but to take away the constant focus of being a father of a son with cancer. 

Work allows me 10 hours a day to pretend that I have no worries in the world. Of course, Eli is always on my mind, but when I’m at work, I’m able to put Eli in the back of my mind and focus on other things.

A lot of times, especially when I’m at work, I wear a mask. I hide my inner feelings, I feel that I need to do this so that people can’t see my pain. People often ask how I am and how Eli is; so many times I just say that we are fine. 

At times the pain of the past and the pain of having a sick son is just too painful to talk about. Sometimes it’s just easier to pretend that life is wonderful, but some days it is not.

Please don’t worry about me, I’m getting the help that I need. I just thought putting my feelings in writing would help me feel better. Maybe just better because people now know how I really feel inside. Getting this off my chest helps me feel that I don’t have to hide behind a mask any more.

Feature image: Supplied.