Young girl with cancer contracts flesh-eating fungus from sandfly bite on leg

A young family’s life has been turned upside down with their two-year-old battling Leukaemia, as well as a life-threatening infection. Now, her mum is sharing the ‘raw, unfiltered’ journey of childhood cancer with others.

ELLIE'S STORY

 

WARNING: Graphic images to follow

Parents know their children like no one else, and it was a mum's decision to follow her gut that led to a devastating diagnosis for her daughter.

One, that if not picked up, would have been fatal.

At two years old, Ellie Ross was diagnosed with Acute Lymphoblastic Leukaemia, but in the few months she has been battling the disease she's also faced an even deadlier diagnosis - developing the rare flesh-eating Rhizopus infection in her leg just two weeks into chemotherapy.

Karlie Ross and her beautiful daughter Ellie Ross.

It was in January when the family's lives were turned upside down after Ellie's mum and dad, Karlie and Mason Ross, picked up signs that their daughter wasn't right.

Ellie developed a deep chesty cough and severe fever, and as the weeks went by she continued to worsen, but Mrs Ross was continually told by doctors that her daughter was okay.

On Australia Day the family went camping where Ellie was miserable.

"She was refusing to walk, seemed to be in pain, was coughing and wheezing, and she had become lethargic," Mrs Ross said.

"As soon as we got back I took her to a different doctor and explained that Ellie was now falling asleep multiple times per day."

This doctor ran a full blood count and within less than two hours Mrs Ross received an urgent phone call and discovered the test indicated the presence of leukaemia cells.

Straight away they were taken in an ambulance to the Queensland Children's Hospital where Ellie stayed for three months.

Chemotherapy began immediately, but just two weeks into the treatment Ellie was facing another battle with an infection in her leg which originated from a sandfly bite from the camping weekend.

Ellie Ross as she battles the infection.

"Her immune system was floored, and this left her susceptible to infection," Mrs Ross said.

"A purple dot began growing inside the sandfly bite on her ankle. Although she was immediately started on dual antifungal therapy, the dot continued to rapidly grow, and it was physically eating away the flesh on her ankle."

A biopsy confirmed it was a Mucormycosis infection and her strain was Rhizopus.

This type of infection has an 80% fatality rate and is highly resistant to antifungal medication so the only way to control it was to cut it out, as well as needing to adjust her chemotherapy to help her immune system become stronger.

 

"We quickly realised that her cancer was a tiny monster compared to the new one we were facing," Mrs Ross said.

The news was another blow, however after 11 procedures and three weeks, Ellie was given the all clear with the fungus under control.

As there wasn't enough time to complete a normal skin graft, with everything else Ellie was going through, she has now been left with a crater in her leg and has had to learn to walk all over again.

Mrs Ross said the months they had spent in hospital had been a mixture of "chaos, uncertainty, anxiety, and grief."

Ellie Ross with her toys at hospital.

"The cancer journey is so unpredictable, and there are so many bumps along a road that has no light to lead its way," she said.

"It also left my husband and my son, Leo, home in Highfields.

"Since Mason is self-employed, there wasn't really an option to relocate to Brisbane, and we've tried to keep some consistency for our son."

Mrs Ross and Ellie are back home, but still making multiple weekly trips to Brisbane for chemotherapy, blood tests and physio.

She said overall they were all coping okay because of the incredible support they had.

"We certainly have our down days and some days are incredibly tough. For example, Ellie is having to learn to walk again so it becomes quite tiring carrying her and her chemo pump around 24/7 while trying to do her leg rehabilitation," she said.

"Our family is incredibly supportive and call us daily to check if we need anything. We also have a really generous bunch of friends who help us a lot with our son.

"The Toowoomba community have been so supportive with holding fundraisers for us and we are always so humbled that strangers donate money to us to help with the ongoing costs of this diagnosis. Ellie loves receiving special videos from people and she has been so spoiled by everyone."

Ellie Ross in hospital.

THE ELLIE PROJECT

 

Karlie Ross is sharing the "raw, unfiltered journey of childhood cancer" as her daughter faces the battle of a lifetime at the age of two.

She launched The Ellie Project earlier this month as a way to share her daughter Ellie's journey as well as advocate for and support paediatric oncology services in regional towns like Toowoomba.

The Ellie Project shares the everyday life of childhood cancer and it's our aim to increase awareness of what these children are put through, including the services who support them along the way.

"I always say that childhood cancer is the club that you never want to be a member of, but once you become one, you are given insider perspective into a life that you didn't know existed and it's heartbreaking," she said.

Karlie Ross and her daughter Ellie Ross.

"Raising awareness of the everyday and enormous struggles of childhood cancer is crucial for increasing people's actions for things like blood donations, supporting cancer services and organisations, and donating directly to cancer affected families."

Mrs Ross said while there were phenomenal people doing important work in regional hospitals, the reality was that paediatric oncology was a very small club.

"There's not many of us and, because of that, a lot of the services we need are based in Brisbane," she said.

"Our regional hospital primarily serves adult oncology and so there are some gaps in paediatric services that require some support, they are not intentional gaps but ones that aren't noticed unless you have a toddler with cancer."

Examples of changes The Ellie Project hopes to make is a change station in outpatient oncology, as it is important for babies and toddlers in nappies because chemotherapy makes their nappies cytotoxic which means they are poisonous and need to be handled with gloves.

Other changes include a designated pram park located near outpatients oncology, or a pathway for prams that leads to oncology from the main parking building.

"Other local oncology families have reached out to me and hope to see funding for additional training for nursing staff in port-a-cath access and care," Mrs Ross said.

"We also have hopes for medication delivery or a courier service to help us retrieve important medication from Brisbane and brought to our local hospital within 24 hours.

"Additionally, we are looking into mental health support services for oncology families and those who have children suffering with rare childhood diseases."

For more information search The Ellie Project on Facebook.

 

Originally published as Young girl with cancer contracts flesh-eating fungus from bite

Originally published as Young girl with cancer contracts flesh-eating fungus from sandfly bite on leg