28/11/2016
Ava's parents never expected to hear the words that would change their family's life as they knew it. Christine and Jason shares Ava's story and how their little girl inspired their local community to raise over $9000 in support of childhood cancer research. 
 

At 6 months old I noticed that Ava was different to her sister, she had trouble turning her head, never moved her legs and was extremely floppy for a child that age.

I consulted a Paediatrician who diagnosed her with torticollis and recommend physiotherapy. I was told that she was double jointed in her legs and that’s why she rarely moved them. I wasn’t happy with this explanation and continued to seek different opinions from different treatment providers.
 
On the morning of the 14th September 2015, a day I will never forget. Ava woke up with a very funny sounding cough and she was struggling to breathe. I was very concerned so I called an ambulance.

By the time the ambulance arrived the cough was gone and she was breathing much better, however I asked the ambulance driver to take her in for observations, as I just knew something wasn’t right.

Once at the hospital, Ava was reviewed by a paediatrician who said she felt Ava had contracted a virus from her sister Isabella, who had just started daycare. The paediatrician said she would give me a script for some meds and I could take Ava home.

This didn’t sit right with me so I asked for a chest x-ray. I was told that Ava was too little and an x-ray wasn’t necessary as she didn’t have a temp and there was no reason for it.  I begged and begged, as mother's instinct told me that something very serious was wrong. But again I was told it was too much radiation and not required.

I began to cry when finally the paediatric agreed to do the x-ray and we headed to radiology. Ten minutes had passed and I was told that the x-ray was abnormal and Ava had to have further testing. At no point did I ever expect to hear the words that changed my family’s life as we knew it.

After further testing, it was confirmed that Ava had Neuroblastoma in her chest and spinal canal.

When I heard the words, “we have found a mass and we believe your child has Neuroblastoma,” I immediately went deaf. I could see the doctor talking to me but I couldn’t hear a word she was saying. I believe I went into immediate shock as I couldn’t feel my limbs or speak.

The next thing I remember the doctor saying was “ We have contacted the Sydney Children’s Hospital and an Ambulance is on its way to pick you up and Ava will be admitted there through intensive care as she is in a critical condition.”

Before we knew it, we were in an ambulance on our way to Sydney Kids and reality set in that my daughter had cancer and was about to start a journey that we had no idea what the outcome was going to be.

Upon arrival, we were taken to a private room and we were told the severity of her condition and survival rates for children her age. I have never been so scared in my life.

The following day, Ava was intubated and underwent a variety of scans to confirm the diagnosis and the size of the tumour.  Waiting for the results felt like a lifetime. That night it was confirmed that Ava had stage 3 Neuroblastoma and her tumour was over 1kg. It was wrapped around her heart, lungs and windpipe as well as intra- spinal, which explained her lack of movement and issues with her neck, legs and breathing. I was told she was inoperable and the only treatment option was chemotherapy.

By day 2 she started chemotherapy and had 3 week cycles. As a parent, this was the hardest thing I had to watch but unfortunately there was no other option for Ava. After six Chemotherapy treatments, Ava’s tumour had shrunk 75% which meant she was now eligible for surgery. My husband and I were told about all the surgery risks and things that could go wrong but the truth was without the surgery, Ava’s tumour was not going to shrink anymore and it had to happen.

Surgery took about 7 hours and the surgeon managed to remove 90% of the tumour in Ava’s chest. Following this, Ava had two further chemotherapy treatments and completed treatment in February 2016.

Ava has been deemed stable now for 9 months and we couldn’t be happier. She still has a long road ahead with weekly physio to improve her mobility, repeat scans every 3 months and constant follow-ups with Sydney Children’s Hospital.

The fear of the cancer returning never leaves you as a parent especially as scan time approaches. However we have learnt to stay positive, have faith and never give up.

Our daughter is an inspiration to all, she fought hard and she is winning the battle.

Ava with her big sister, Isabella

With the support of Ava's family, friends and local community members, they raised an amazing $9,200 at a special fundraiser held in support of The Kids' Cancer Project last September. A big thank you to Christine and Jason for sharing Ava's story and to all involved in their fundraising event. 

Ava with parents, Christine and Jason





 

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