Defying the Odds: Zara's Cancer-Free Journey

12/02/2024

Zara's journey is a story of triumph. Now, seven years old she recently celebrated being five years free from cancer. 

Despite being described as epitome of a perfect baby by her parents, Zara, who had been reaching milestones ahead of schedule and a joyful baby, faced a diagnosis of Malignant Rhabdoid Tumour (MRT) in her soft tissues at the age of 13 months. 

What began with seemingly innocent symptoms like constipation and loss of appetite, concern prompted her parents to seek medical advice. 

Despite multiple visits to paediatricians and initially benign diagnoses, Zara's mother, driven by maternal instinct, pursued further investigations. It was revealed that a substantial 2kg tumour had emerged in Zara's petite 10kg frame, located on her stomach and spreading into the lining of the abdomen and lungs. Emergency surgery was performed, but the tumour returned within 10 days. Without a clear diagnosis, Zara went to three different hospitals before her parents recognised the need for specialised care and she was transferred by an air ambulance to Great Ormond Street in June 2017. 

 

Image: Zara's 1st birthday before diagnosis

 

Under the dedicated care of a multidisciplinary team at GOSH led by Dr Olga Slater Consultant Paediatric Oncologist and Clinical Lead for Oncology. Zara's diagnosis of malignant metastatic rhabdoid tumour was confirmed. She underwent High Dose Chemotherapy and Stem Cell Rescue, followed by maintenance chemotherapy. 

Despite the expected side effects of chemotherapy, Zara's recovery showcased her determination. Her father, David, felt the care she received at GOSH added to this, acknowledging the exceptional support from various specialists. 

Most of all she was treated with unwavering and overflowing love, care, and concern as a little girl. We cannot understate the impact this had on her wellbeing and drive, and we had not experienced this before Great Ormond Street Hospital.

David, Zara's Dad

The support provided by play specialists, occupational therapists (as she had to learn to walk 3 times because of the impact of treatment), physiotherapists, nutritionists, healthcare assistants were phenomenal

David, Zara's Dad 

 

The aftercare included regular follow-ups with scans, kidney and heart tests, and assessments of growth and development.  At the age of two and a half, she embraced life, starting nursery shortly after ringing the end-of-treatment bell. 

 

All Zara had needed was a chance, she did the rest. As soon as she was well enough to do anything, she would do it. We were guided by her and shortly after she finished maintenance chemotherapy and rang the end of treatment bell at age two and a half, she started nursery. She has never looked back.

David, Zara's Dad 

 

Zara ringing the bell at the end of treatment

 

Zara's story of recovery is highlighted by Dr Slater, who initially pointed out the poor survival rate associated with metastatic rhabdoid tumour. Seven years after her diagnosis, Zara is not just surviving but thriving, displaying remarkable progress and health.

 

Zara is doing extremely well. She is growing, developing, and thriving as any other healthy child.

Dr Olga Slater, Oncologist Consultant

 

She did note Zara has changes in the liver known as focal nodular hyperplasia – “which is the reaction to chemotherapy received but we are monitoring these lesions carefully.” said Dr Slater 

 

Zara with Dr Olga Slater at her last check up in 2023 

 

Beyond medical care, GOSH provided Zara's family with sanctuary, hope, and a transformative perspective. The family now advocates for personalized care and aims to correct common misconceptions about paediatric oncology. Zara's case is unique due to her successful journey despite the challenging diagnosis. 

 

Zara's post-treatment achievements include completing nursery, transitioning to big school (now in Year 3), exploring artistic talents, engaging in beach activities, dispelling concerns of hearing loss due to treatment, welcoming a little sister, and evolving into a compassionate and empathetic child who helps new students settle in at school. 

 

Zara, aged 3, with baby sister Isabella

 

As Zara transitions to the Late Effect Clinic for follow-up regarding growth, pubertal and other development, kidney, and heart function.

It is hard to put into words what GOSH gave us as a family. It provided sanctuary, hope, support and changed our lives and perspective forever. We are forever grateful for GOSH and how it saved us all. 

David, Zara's Dad

 

Zara's story is not just one of survival; it's a proof of resilience, care and the transformative power of healthcare that extends beyond the clinical outcomes. The family's collective journey has led to a fundamental shift in their perspective on health and wellbeing, stressing the importance of focusing on the individual's journey, not just the condition they are fighting. 

 

Family in Maldives for Zara's 7th Birthday

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