Cancer disrupted this family’s dream of a better life

We moved to Adelaide from India in March 2020 – my husband Viren, son Luke, baby Mikaela and I. We were hoping for a better life, but the COVID situation was bad and it was difficult to get a place to live or find a job.

Then Mikaela started getting sick. We thought it was just the change in weather. But, before Easter she stopped talking and moving. She was clinging to me and crying through the night. We took her to the doctor and he told us to take her to Emergency if she wasn’t better in a day or two. The next night, I rubbed my hand over her body and felt a big lump. That’s when we decided to get her to hospital.

We had only been here a month and we didn’t have a car, so it was very scary. You can’t take a sick child on public transport!

We contacted a family we connected with on Facebook and those people drove us to the hospital and looked after Luke, even though he didn’t know them.

At the hospital, the doctors discovered that Mikaela’s liver was pressing against her lung, stomach and thigh. It was damaging her body. That’s why she stopped walking and talking.

The next day Mikaela was diagnosed with hepatoblastoma – cancer of the liver. She was only 19 months old.

Far away from family

While we were waiting for everything to sink in, we called our families back in India. They were like, “No, it can’t be. It must be a wrong diagnosis.” It was difficult to explain it to them. My family had never experienced anything like this.

We were really scared. We came with enough money to survive until my husband got a job and we weren’t prepared for such a major event.

After four rounds of chemo, Mikaela looked like a little chicken, her legs were so thin. We wondered every day whether she would get through it. Then the doctor’s told us our only option was for Mikaela to have a liver transplant and we would have to go to Sydney for that.

We couldn’t afford it, but there was no way we could go back to India. We’d sold everything and cancelled our health cover over there. We ended up staying in Sydney for three and a half months while Mikaela had her transplant.

Support from Redkite

In hospital we were given a Redkite bag and it was so helpful. I still use it. It’s always packed and ready to go with clothes for Mikaela and me, toiletries and the medications she will be on for the rest of her life.

At the hospital a social worker also introduced us to Redkite’s financial assistance because she knew my husband didn’t have a job and we weren’t doing well financially. Redkite gave us financial support and paid a few bills. We were so, so grateful. I don’t know how we would have managed otherwise.

It was tough for the whole family

It was very tough on our son Luke. He couldn’t understand why Mikaela was so sick. He was like, “You said we’ll have fun in Australia. Now, you’re spending so much time with Mikaela. Why are you not spending time with me?” He wouldn’t listen to us. He was defiant and wanted to be with me all the time, but I had to be with Mikaela.

Once we were back home, I also felt the effects on my relationship with Viren. It was difficult for us to live a normal life. We were so used to me living in hospital that we forgot how to live together at home.

The future

Now that we are back at home, Mikaela and Luke can’t do without each other. They’re together all the time. They go to bed together, they want to do everything together. My husband has a job, so we sit and talk more and everything has begun to fall into place slowly.

But, we’ll never be the normal that we were before everything happened.

Mikaela will need ongoing treatments with doctors and occupational therapists. She also needs treatment to get over her phobia of food. Because she was fed through her nose for so long, she forgot how to eat.

When I think about what could have happened, it’s scary and stressful. Sometimes I really need my parents, but we are still hoping to make Australia our home.