When Dana took her then four-year-old daughter, Nora, to the family GP with persistent tummy pain and weight loss, she thought it was nothing more than constipation.
The doctor recommended a high fibre diet and plenty of water, but when Nora’s pain continued, Dana took her to the Emergency Department at their local hospital.
Dana stood firm when the hospital diagnosed constipation once again, convinced there was something more going on with her little girl, and insisted on an X-ray and ultrasound.
“I still remember the doctors saying they couldn’t find her kidney or spleen, and that there was a mass,” said Dana.
After more tests, Nora was rushed to the RCH in an ambulance, where the unthinkable was confirmed – Nora had cancer.
Within 48 hours of her arrival at the RCH, Nora began six weeks of chemotherapy ahead of surgery to remove the mass. It was hoped the chemotherapy would shrink the tumour, but it failed to work.
“In surgery, Nora’s surgeon, Michael Nightingale, found a 17cm tumour under Nora’s ribs and down into her pelvis. They ended up removing her kidney and the tumour, and a biopsy of the 1.4kg tumour and kidney tissue confirmed that it was two types of Wilms’ tumour,” said Dana.
“She had a second surgery a week later where doctors found a lesion on her remaining kidney. Thankfully they were able to remove it, but in the same surgery, they also identified a Chyle leak, which happens when your lymphatic vessels are damaged. Nora ended up having to stay at the RCH for three months after that,” she added.
Unfortunately, that wasn’t the end of Nora’s journey at the RCH – she soon began another 34 weeks of chemotherapy and underwent a third surgery to remove more tumours from both of her lungs.
Dana is eternally grateful for the support their family received during Nora’s three-month stay on Kookaburra Ward.
“Our whole family developed such great relationships with the nurses and doctors, we call them our Kookaburra family,” Dana said.
“We honestly could not be more thankful for the RCH. All the specialists are there, and you know you’re in the best hands possible,” she added.
While it has been a long journey for Nora and her family, the treatment has worked, and Nora is officially in remission.
Throughout the last nine months, Nora, like hundreds of other patients across the hospital, has experienced world-leading care only made possible thanks to philanthropy. Here are some of the programs that impacted her.
Cares (4 kids) Program
Nora at art therapy
Funded by the RCH Foundation, the CARES (4 Kids) Program provides holistic care for children and young people undergoing treatment in the RCH Children’s Cancer Centre (CCC).
One component of CARES (4 Kids) is the Comfort First program.
Fully integrated within the CCC, it is considered a fundamental part of patient care and aims
to empower children and families by teaching coping strategies and building on their existing strengths to help reduce distress and anxiety throughout treatment.
Dana credits the Comfort First team with making ‘the whole experience a little lighter’.
“If it wasn’t for the Comfort First team, I don’t know where we’d be, they’ve done an amazing job at keeping my girl calm,” shared Dana.
It was the Comfort First team that helped Dana and Nick realise that Nora likes to have a plan. Knowing this, the team made sure to keep Nora informed about what was happening and why, which immediately reduced her stress.
The Comfort First team also introduced Nora and her family to the Beaded Journey.
These colourful beads are given to cancer patients at the RCH to mark each milestone and significant event throughout their treatment. Each bead symbolises a specific procedure completed – for example, a gold bead with vertical lines represents surgery while a cream bead represents chemotherapy – and tells a powerful story of how far they’ve come.
Nora has 319 beads and counting, with a few months remaining of chemotherapy treatment. One of the most special beads she has is a multicoloured balloon bead she was given on her birthday in April while on the ward.
She loved the program – and her favourite clinicians Alicia, Jess and Kari – so much that she now wants to be a Comfort First clinician when she grows up.
Nora has also been able to enjoy art therapy, another component of the holistic CARES (4 Kids) Program.
“Art therapy can be used as an effective modality for self-expression, self-regulation and for processing the experiences of hospital and illness through a creative form. It allows choice and control for patients in a situation in which they have minimal control,” said Matilda Dawson, Art Therapist at the RCH.
Nora loved doing art therapy with Alex and Tilly, who gave the bubbly four-year-old the nickname ‘glitter queen’.
“We’d come in after an art therapy session and Nora would be just covered in glitter, and grinning from ear to ear,” Dana recalls with a laugh.
“Nora had had two abdominal drains so she couldn’t move around much, so it made a huge difference to have Alex and Tilly come to us, and it was just the best way to break up the long days in hospital,” Dana added.
This program is supported by Woolworths via the Good Friday Appeal, Camp Quality, My Room Children’s Cancer Charity and Lifestyle Communities.
Music Therapy
Nora with her music therapist, Lauren
Music can be incredibly powerful in a clinical environment, and can assist in decreasing anxiety and stress, refocussing from pain, and release endorphins to improve mood and overall wellbeing.
For music therapist Lauren Miller, actively engaging in a personalised music therapy program can connect children with elements of their life or self, prior to diagnosis and hospitalisation, and provide ongoing support throughout their treatment journey.
“Active engagement in positive and meaningful activities enables children in hospital to develop trusting relationships with staff, and support healthy coping skills, leading to increases in a child’s confidence and mastery of the hospital environment and aspects of their treatment,” she said.
Thanks to the generosity of the community, music therapy is offered to patients right across the hospital, just like Nora. Lauren was the first person Nora connected with at the hospital.
“The first day we walked into the RCH, Nora spotted Lauren setting up in the Hut on Kookaburra. Nora tugged on my top and asked, ‘who’s that?’. Lauren overheard and came over to chat with us. She introduced herself and asked Nora if she wanted to sing a song,” Dana recalled.
“My heart just soared when they started singing Let it Go from Frozen. Nick and I were in gushes of tears – it was so nice to see Nora happy in that moment after the rollercoaster we’d been on in just a few days,” she added.
Lauren became a constant for Nora during her time on Kookaburra, with music therapy sessions most days.
Nora proudly shared that she ‘got pretty good on the guitar and drums’ because of music therapy, which is music to Dana’s ears.
Music Therapy is supported by The Shine On Foundation and various RCH Foundation Bed Sponsorship donors.
Syringe Drivers
Thanks to the support of philanthropy, the RCH has been able to upgrade its fleet of syringe drivers – a small yet mighty device used in the care of children like Nora every single day.
Clinical Nurse Consultant Kym with the new syringe drivers
A syringe driver is a small, portable battery-operated pump that gives a steady flow of medicines through a small tube just under the skin of a patient’s arm, leg, stomach or back. The devices make it easier than ever before for medical staff to precisely administer intravenous medications, fluids and nutrition to some of the hospital’s sickest and most fragile patients.
The new syringe drivers also feature animated pictures on the front that give children a visual guide as to how long the procedure will take – something Nora loved.
“Nora liked watching the picture on the front and calling out as the syringe emptied – ‘it’s half-way, it’s almost done, only a little bit to go, it’s done!’ It made a routine part of treatment much less stressful and even a little bit fun!” Dana said.
Syringe Drivers are supported by The RCH Auxiliaries and The Good Friday Appeal.
Children’s Cancer Centre (CCC) Biobank and Cancer Research
Dr Louise Ludlow, the CCC Biobank Manager.
Each day across the RCH and the MCRI, hundreds of clinicians and researchers work on vital cancer research, ensuring that the hospital remains at the forefront of paediatric healthcare. From innovative cures and treatments, to improving the quality of cancer care, they work tirelessly to ensure a brighter future for sick children like Nora.
A key player in enabling this cutting-edge cancer research is the philanthropically funded, Children’s Cancer Centre (CCC) Biobank.
By collecting tumour samples from children, including Nora, the CCC Biobank plays a pivotal role in supporting cancer research efforts. Scientists and researchers rely on these samples to investigate the causes of cancer, develop new treatment strategies, and minimise the side effects of existing therapies.
“The CCC Biobank is a resource for diagnostics and discovery. From a diagnostic perspective it allows for further testing to be done without the need for repeat patient samples or procedures. From a discovery perspective, the CCC Biobank has supported 44 translational research studies, covering a wide range of tumour types and methods,” said Dr Louise Ludlow, CCC Biobank Manager.
These research efforts have also been amplified by Professor David Eisenstat, Director of the CCC, and the rest of his team. Both Louise and David believe that the Biobank has the potential to help every child diagnosed with cancer at the RCH.
“Sometimes the only way you can get a child enrolled in a clinical trial is to make sure their tissue has genes affected that would respond to that drug,” David shared.
“In some ways, investing in the Biobank leverages savings of hundreds of thousands of dollars in drugs that we wouldn’t otherwise get. This is a big deal to us and to our patients,” he continued.
David’s work also extends far beyond the Biobank.
Thanks to the RCH Foundation, David and his team have been able to focus on the ‘quality of survivorship’. This means leveraging clinical trials and research to develop safer drugs, use existing drugs more safely and critically, understand how cancer develops during childhood.
“If we can understand normal developmental pathways, we can take that knowledge, harness
it and apply it to treat the cancers themselves, instead of just hitting children with chemotherapy and radiation,” David explained.
“From there, we can figure out and reinstate the normal process of development in that cell. Then it will stop dividing and stop acting like the cancer,” he added.
David is also proud of his team’s ability to approach difficult concepts using a holistic approach. By asking the same questions as families and following patients after their treatment journey, David’s lab has been able to advance cancer research in a groundbreaking and one-of-a-kind way.
Together, David and his team are building a healthier future for children in Australia and around the world.
“For those who relapse, the success rate is 10 per cent. So, if we don’t cure them the first time, the next time it’s diminishing returns. That’s why we want to improve what we do up front,”
David shared.
“We’re in a really good position at the RCH to make a difference, both in innovating here on campus, but also applying advances elsewhere in the world to help provide that for our children,” he continued.
The CCC biobank is supported by the Samuel Nissen Charitable Trust, Robert Connor Dawes Foundation, H.T. Pamphilon Fund, Cancer Crusaders Auxiliary and Cancer in Kids Auxiliary (CIKA).