Children's Cancer Institute

Izzy had this real passion for life. She just lit up a room

- Sarah, Izzy’s Mum

Adventurous, passionate, and joyful, Izzy grabbed life with both hands. Known for her enthusiasm and willingness to give things a go, she wasn’t going to let a diagnosis of cancer stop her from making the most of every minute she had.

Pre-diagnosis

As a 4-year-old, Izzy was rushing headlong into life. Camping, dancing, dressing up, gardening, mud pies… she loved it all.

‘Izzy had this real passion for life,’ says her mum, Sarah. ‘She had this brightness about her that would spread to all those who met her.’

‘She was also very in tune with nature and with animals. She said to me that when she grew up, she wanted to be an adventurer who would go into the jungle and find injured animals and look after them. Part of me thinks that maybe her role now is to care for all those animals up there in heaven.’

Symptoms

Izzy was part of a tight-knit family. Sarah and Craig, her mum and dad, had met in high school at Forster and still lived in the area. Izzy was very close to her older brother Thomas, and little brother Lachlan, and the family was active in the local community.

Craig and Sarah had started to notice some changes in Izzy. After talking with some work friends, Sarah says the dots started to join and she realised she needed to see their doctor.

‘I made a bit of a joke of how I feel like whenever Izzy goes to preschool, I get a phone call to say that she’s had a fall or something and I need to sign an incident report. Then I went away and thought about it, and it rang some alarm bells.’

I just had that gut instinct that something wasn’t right

- Sarah, Izzy's Mum

Around the same time, Izzy had a couple more falls, bruising herself quite badly. Sarah took her to the GP, who agreed to get some things checked. This led to learning that Izzy had a slight loss of hearing in one ear, as well as a possible lazy eye which needed investigation.

‘I had a bit of a sinking feeling when I found out the hearing loss was on the same side as the lazy eye,’ says Sarah. ‘I just had that gut instinct that something wasn’t right.’

Diagnosis

Sarah took Izzy to an eye surgeon, who gave her a referral to get an MRI scan done at the local hospital. Sarah and Craig were waiting for the results when a doctor walked in with a box of tissues.

‘He told us that Izzy had a brain tumour, it wasn’t in a good spot, and it wasn’t likely that there was anything they could do,’ says Sarah. ‘In one sentence, he virtually signed her death certificate.’ Craig says that in that moment, their whole world fell apart. ‘Sarah curled over in tears, and I walked over and stroked Izzy’s perfect little face as she slept. I couldn’t imagine our life without her in it.’

‘While Izzy slept, we called all our friends and family to share the news. We had to put our life on hold so we could focus 100% on Izzy and our two boys. Sarah stayed the night at the hospital, while I went home to pack our things. Not knowing if our girl would even make it home again was agonising. I sat on the floor of her room and wept.’

I couldn’t imagine our life without Izzy in it

Craig, Izzy's Dad

Izzy was flown with Sarah to Sydney Children’s Hospital. ‘Every 10 minutes I burst into tears, and the nurse would hold my hand,’ shares Sarah. ‘I was devastated. It felt like walking around in my worst nightmare, and I was full of fear and anxiety for the journey ahead.’

Izzy had a brain biopsy done and was put in intensive care. As she recovered, Sarah and Craig met the oncology team and learned that Izzy had an aggressive brain cancer called DIPG (diffuse intrinsic pontine glioma), which had a nine-month life expectancy.

‘We are a family who want our children not to be rich and successful, but just to grow up and be good people and make a difference in the world,’ says Sarah. ‘We had dreamed of Izzy’s future, and to find out that she wasn’t going to be there … it was heartbreaking.’

Treatment

Izzy was put on medications to relieve her symptoms, with a view to starting on radiation and potentially a clinical trial after that. ‘The treatment was all about extending her life, not saving it,’ says Sarah.

‘As parents, you always hope that your child will be the miracle, and even though probably somewhere deep down you know that she won’t, you still can’t let go. Right up until she passed away, we still had that hope in our hearts that her life would be saved.’

After seven weeks of radiation therapy, Izzy’s symptoms had reduced to virtually zero. ‘She was like just a normal four-year-old girl,’ says Sarah. ‘We came home ready to make the most of our time together.’

Making Memories

While waiting for a camper they had ordered to be delivered, the family enjoyed spending quality time together at home.

‘Right from the first moment of Izzy being diagnosed, Craig and I said to each other: We can’t control the outcome of this; the only thing we can control is our kids’ experience,’ Sarah says. ‘So we committed to showing the kids the wonder of life, and creating memories with each other that they could treasure.’

In January 2021, Izzy joined a new clinical trial of a new treatment called ACT001, and the family once again spent time together in Sydney. Weekly, fortnightly, then monthly, Izzy would go to the hospital. Once the hospital visit was done, the family would go exploring.

Izzy had this bravery and a willingness to give things a go. Nothing held her back.

- Sarah, Izzy's Mum

‘Some of the happiest memories of my life come from that time,’ Sarah shares. ‘Izzy was energized, and it seemed like she was in such a good place. It was summer, so we went swimming a lot, and we just had the best time.’

‘Izzy had such an ability to enjoy the day. She had this bravery and a willingness to just give things a go. Nothing held her back. Our family motto has become: What would Izzy do?’.

The Turning Point

In the lead up to Izzy’s 5th birthday, symptoms began to appear. Her behaviour started to change, and Craig and Sarah noticed her having silent seizures. Her balance was unsteady, and she became less independent as she became more unsure of herself. A visit to the local paediatrician showed a tic had developed in one foot, which rapidly progressed to the other.

‘We had an MRI booked for a few weeks’ time, but with her birthday only days away, we put our sole focus into making it the best birthday ever,’ says Sarah.

‘Izzy had asked to have this special unicorn birthday, and it was just a magical day for her. We knew it was her last birthday. We focused on making it as happy as possible, because we knew it was going to be downhill from there.’

A week later, Izzy went for an MRI scan at Sydney Childrens Hospital. The family stayed at Bear Cottage, and began preparing themselves for the palliative care journey ahead.

Palliative Care

When Izzy’s scan results came back, the family were told they likely only had a couple weeks left. Over what turned out to be 12 weeks, Sarah and Craig focused on creating special experiences for Izzy, using Bear Cottage as inspiration and their community for support.

This included getting ‘a crazy coupé car’ for Izzy to use as a wheelchair, and making a special ‘disco bath’ with lights, bubbles, a disco ball and a soundtrack to match. Best of all was a visit from a ‘real-life unicorn’, which Izzy was in absolute awe of.

‘We had so many people around us create some really special opportunities for Izzy,’ says Sarah. ‘Our community has been absolutely amazing.’

Eventually, Izzy went onto morphine, and five days later, she passed away peacefully at home. When Izzy’s body was taken away, her neighbours and preschool teachers lined the street. ‘There was a guard of honour, just on sunset. It was absolutely magical.’

Izzy is still very much a part of the family. ‘We carry her zest for life in our hearts, and she inspires us every day to follow our dreams and make the most of every experience.’

There is always hope

Sarah says the family never gave up hope, but that their hope changed along the way.

‘Our hope became that the time we had together would be special. That Izzy could enjoy life as much as possible, that she wouldn’t suffer. That she would live long enough for Lachy to remember her.’

‘The hope we hold in our hearts now is that a cure to DIPG will be found.’

‘We want to share our story to help build understanding of the devastating impact cancer has on children and their families, and to encourage others to support the cause in whatever way they can,’ says Craig. ‘We hope that one day, families won’t have to experience the loss of a child to DIPG as we did.’