Maria's story

Maria essentially grew up in hospital. All her milestones happened in hospital – she started walking in there, said her first words in there…

- Cathy, Maria's Mum

Spending far more time in hospital than at home, Maria's first few years of life were traumatic. On the brink of death not once, not twice, but many times, the fact that she is alive today is nothing short of a miracle.

Pre-diagnosis

Just shy of three months old, Maria had recently had a checkup and appeared to be thriving. A happy and smiley baby, she made everyone around her feel happy. Apart from not breastfeeding well on one side, and crying every time she was put in the car seat, Maria seemed fine.

It got to the stage where I was too scared to touch her. I didn’t know how to hold her so she wouldn’t cry, because every time she cried she turned blue.

- Cathy, Maria's Mum

Maria symptoms

Symptoms

Maria developed noisy breathing, prompting her mum, Cathy, to take her to the doctor. There began a merry-go-round of medical visits and a myriad of diagnoses, ranging from pneumonia to bronchiolitis to whooping cough. Just before Christmas, Cathy drove to the local shopping centre. As she got Maria out of her car seat, Maria stopped breathing and turned blue. Cathy gave her mouth-to-mouth while an onlooker called an ambulance, and Maria was rushed to St George Hospital.

The paediatrician at the hospital thought Maria had laryngomalacia (floppy voice box), and an appointment with an ENT specialist was made for a few weeks’ time. But as soon as Maria got home, she stopped breathing again and her father, Harry, had to resuscitate her on the change table. By the time Maria got back to hospital, she had to be resuscitated every time she cried.

Diagnosis

Maria was taken to Sydney Children’s Hospital where an X-ray showed a mass on the right-hand side of her neck, pressing against her airway. With a diagnosis of neuroblastoma looking likely, Maria was started on chemotherapy and in just a few days, the tumour had shrunk. But when the biopsy results came back, it was found that Maria did not have neuroblastoma. She had a type of sarcoma called primitive neuro-ectodermal tumour (PNET), normally found in older children.

Treatment

Once Maria was able to breathe again on her own, she was transferred from Intensive Care to the oncology ward. Her little body struggled to cope with the high-dose chemotherapy required, so treatment was changed from every three weeks to every four weeks, continuing for a full 19 months. But it wasn’t over yet. In August 2008, now aged 22 months, Maria began radiation therapy. Every day for 25 days, she was given a general anaesthetic and had her neck radiated. A week before her second birthday, treatment finally finished. She was then declared in remission.

Despite all the devastation, it was a relief to know what was wrong and that treatment was starting.

- Cathy, Maria's Mum

After Treatment

After treatment, Maria had to return to the hospital every six weeks for a checkup, then 3-monthly. In 2013, on her seventh birthday, Maria celebrated ‘five years cancer-free’ with a disco party. Still, the visits to hospital continued. As a result of the intensive treatment she received, Maria suffers stunted growth, damaged eyesight, and learning difficulties. She is also at risk of a whole range of ‘late effects’ as she grows older, ranging from a second cancer to heart disease, and will need long-term follow-up for the rest of her life.

Maria after treatment

Today

In September 2020, Maria celebrated 10 years in remission − an incredible milestone. Having reached 15 years of age, she continues to amaze her parents, teachers, and doctors alike. Her mum says she has grown into a kind, respectful and caring young teenager, with a sensitivity that is rare for a girl her age.

I’m always living with the fear of what, or when, or if...

- Cathy, Maria's Mum

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