What it’s like having a child with cancer during a pandemic

Little Chloe Source: Supplied

Managing the needs of a child who has been diagnosed with cancer is challenging enough, but throw in a global pandemic, loss of income and two other children to look after and it’s enough to break most people. Virginia reveals the challenges of 2020.

It was June of this year when my then one-year-old daughter, Chloe, came down with what I thought was an infection, turned nasty virus. When it wasn’t clearing I attempted to take her to our local GP but the pandemic had everyone on edge, especially here in Melbourne, and they refused to see us fearing she may have COVID. Instead I was told to take her to the hospital emergency room.

What followed in the ensuing days was three trips back and forth from the hospital. Each time we turned up, she was monitored and then sent home - doctors telling us it was a virus, or laryngitis. Call it a mother’s instinct, but I just knew something more serious was going on. Her condition wasn’t improving. Finally on our third trip, further testing was done and to my horror she was diagnosed with leukaemia - just one month before her second birthday.

In the space of four days we’d gone from thinking she just had some sort of bug, which she was struggling to shake, to learning our beautiful girl was now going to have to literally fight for her life.

When we got told the news I was on my own with Chloe. A doctor and another lady walked into the room and shut the door behind them. When they revealed the diagnosis the lady had tears in her eyes. Looking back it was a surreal moment, it felt almost like I was slipping into a void. It was heartbreaking and terrifying. I just sat there and cried and cried. I remember thinking about how I was going to break the news to her dad, my partner.

Chloe
Virginia, her partner Adrien and their three daughters.
Supplied

The fight begins

There was little time to grieve. Instead our attention quickly turned to Chloe’s treatment. At that stage it was June, the middle of the pandemic, which meant that only one parent could be in the room with Chloe at a time. One parent also needed to be home watching our other two girls - Chloe’s twin sister and our eight-year-old daughter.

While normally parents would have each other for support in the hospital, for us it meant one of us was always there alone. I missed my partner, it felt like we were ships in the night. Our interactions became limited to a ‘shift change’ so to speak where we would do a handover of the day’s information in the hospital car park and then go our separate ways. Luckily we’ve had excellent staff at the Royal Children's Hospital in Melbourne who have shown such compassion and care to our family during this difficult time.

With everything going on I took extended leave from my job as a midwife. Not only because I needed to be there for my daughter, but also because I couldn’t risk exposing her to any possible germs, let alone COVID, that I might pick up from work. My partner, who had been working as a chef, then got stood down due to the pandemic. Life became incredibly stressful as we tried to parent our other two children, look after Chloe and stay on top of our finances with no income coming in.

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Fortunately a dear friend of mine set up a GoFundMe page to raise money for our family. When I found out this had been done, and I saw the donations that were made, I was overwhelmed, I was in awe of people’s generosity. I don’t know what we would have done without that money. But the money, being used mainly to pay our rent and bills, is dwindling and I don’t know what we will do when that runs out as Chloe’s cancer treatment will continue for another two years.

Friends will ask how Chloe’s treatment went, thinking she’s finished it. What they don’t realise is that the next two years involve Chloe spending multiple days per week in day oncology receiving intensive chemotherapy treatment - plus extra trips and stays in the hospital when she becomes unwell. It’s a daunting process but I’m trying not to look too far ahead, it’s just one foot in front of the other at the moment.

What comes next

As our family settles into a new version of normal, we’ve had to make a lot of changes. My partner has fortunately returned to work with Melbourne’s lockdown restrictions lifted. I’ve returned to work one day a week, but when Chloe is in hospital receiving treatment I can’t work.

We’re relying a lot on friends and family to help us look after the other two children. We have some people on standby that can come in and help us look after the other kids if one of us has to rush Chloe to hospital.

Chloe
The next two years involve Chloe spending multiple days per week in day oncology receiving intensive chemotherapy treatment.
Supplied

At the moment my headspace and emotions are all over the place. I often feel anxious and sad about the situation and there are times when l have a cry in my car or in the bathroom when I’m alone. I find it really hard to see her when she feels sick and nauseous, it breaks my heart and I just want to take the pain away from her and do the treatment for her.

I do feel positive about her prognosis, and so far she’s ticking all the boxes, but the fear and thought of losing your child can creep in and it’s absolutely terrifying so I’ve learnt to just focus on one day at a time.

With Christmas around the corner, and lockdown ended, I’m hoping to give our family a brief moment of joy and to continue to create beautiful, happy moments for them. My hope is that in years to come we can look back on this stage of our lives and appreciate just how strong our daughter is.

Source Insight

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