Caitlyn's Story

At 16 years old, Caitlyn’s life changed in ways no teenager, and no family, could ever imagine. What began as a simple pain in her side quickly unfolded into a devastating diagnosis of neuroblastoma. Caitlyn’s mum, Tanya, shares their story. 

Caitlyn lives at home with me, her dad (Mark), and her three brothers - Matthew, Daniel, and Judd. Until her diagnosis, Caitlyn was a typical teenager with plans, school commitments, friends, and dreams for her future. Almost overnight, those normal routines were replaced with hospital appointments, treatments, and long periods away from home.

The emotional impact on our family has been enormous, as we have had to watch our child endure things no young person should ever have to face.Tanya, Caitlyn's mum. 

Caitlyn’s neuroblastoma journey began in late July 2025. She started complaining of pain in her side, which we initially thought was a stitch or a pulled muscle. Soon after, Caitlyn began experiencing frequent headaches and ongoing nausea. One night, we took her to urgent care, but nothing concerning was found. 

A few days later, Caitlyn showed us a large lump on the side of her neck. We immediately took her to our local hospital, where she was admitted for five days.

Doctors told us her infection levels were high and her haemoglobin was extremely low. She was treated with antibiotics for what they believed were infected lymph nodes and was sent home.

Over the following two weeks, Caitlyn returned for blood tests and follow-up appointments. Her infection levels remained high. At the second appointment, a different doctor reviewed her case, stopped the antibiotics, and ordered a biopsy of her neck.

One week later, we were told the news no parent is prepared for: Caitlyn had cancer. We were shattered.Tanya, Caitlyn's mum

Within an hour of receiving the diagnosis, we packed our bags. Living two hours from the nearest children’s hospital, we made the urgent trip to Melbourne. We thought treatment would begin straight away, but we were wrong. Caitlyn spent nine days in hospital undergoing an overwhelming number of tests, including CT scans, an abdominal ultrasound, MRI, MIBG, and PET scans. Those days were filled with uncertainty, and the constant stress of waiting for answers. 

The oncologist explained that the treatment would be long and extremely challenging.

Due to Caitlyn’s age and the extent of the disease throughout her body, she was classified as high-risk. 

Since May this year, Caitlyn has lost close to 16 kilograms. The side effects of chemotherapy are relentless - and Caitlyn has experienced almost all of them. She developed severe mucositis and is allergic to morphine and oxycodone. During this time, she pulled out her nasal tube and damaged her port, requiring a second port to be inserted. We’ve lost count of how many blood and platelet transfusions she has needed.  

Routine hearing tests during induction chemotherapy showed that the treatment has also affected Caitlyn’s hearing. Caitlyn has had countless hospital admissions since her diagnosis. The Monash Children's hospital has become our home-away-from-home. 

She has collapsed multiple times, has often been admitted the day before chemotherapy for extra fluids, and experienced a tonic-clonic seizure (Caitlyn also has epilepsy) which resulted in an almost three-week hospital stay. 

She was meant to undergo stem cell retrieval over the past two weeks, but her counts have not been high enough, so this has been postponed for now.  The surgery to remove the mass in her abdomen took over 12 hours, and while surgeons hoped to remove 90-95% they could only take out 70%.  

The waiting, the uncertainty, and the constant worry have taken a heavy toll on all of us. I’ve had to stop work completely, and my husband has reduced his hours.

The day of Caitlyn’s surgery marked 20 weeks of us living in Melbourne for her treatment. Being away from home, separated from our support networks, and trying to keep life as normal as possible for our family has been incredibly difficult.Tanya, Caitlyn's mum

I don’t think any parent ever imagines their child will get cancer - yet here we are. We are sharing Caitlyn’s story so we can help people understand the devastation this disease causes. While it is a cancer that mostly affects younger children, teenagers are not immune. We desperately need treatments that are more effective and cause less harm to developing bodies. 

 

Help Teenagers Like Caitlyn

Neuroblastoma Australia is working with researchers to develop more effective and less toxic treatments for all children diagnosed with neuroblastoma.

We need to ensure every child gets the opportunity to grow up and lead a long and healthy life. Your help matters. Your donation to Neuroblastoma Australia ensures that we can continue to help fund the research needed to develop better and safer treatments, and ultimately find a cure.

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