Zahra's story
Zahra was diagnosed with neuroblastoma when she was just two weeks old. Now 21, she recently graduated with a law degree! This Childhood Cancer Awareness Month, Zahra shares her story to help other families currently experiencing neuroblastoma. “If my story can offer solace, inspiration, or guidance to just one person or family, I find immense fulfilment in knowing that my experiences have made a positive impact.”
Aged two weeks and struggling to breathe
“...they found a mass in my abdomen. I was later diagnosed with infantile left adrenal neuroblastoma. For my family and I, this meant embarking on a journey that few could fathom, much less predict the outcome of.”
Zahra was diagnosed with cancer at just two weeks old
“I was born in November 2001. Within a day, I became unwell with streptococcal sepsis and was transferred from my local hospital to the neonatal intensive care unit at Great Ormond Street Hospital.
In December 2001, as a mere two-week-old infant, my parents noticed my struggle to breathe. The irregularity of my breath was matched by my body turning an alarming shade of blue. The urgency of the situation led my parents to seek immediate medical attention where I was instantly sent to Great Ormond Street Hospital. This marked the beginning of a battle that would define my early years.
At first, the medical professionals were puzzled by the intricacies of my condition. My blood pressure was unusually high, and I was treated for hypertension. I also had an ultrasound scan - that was when they found a mass in my abdomen. I was later diagnosed with infantile left adrenal neuroblastoma. For my family and I, this meant embarking on a journey that few could fathom, much less predict the outcome of.
The scars of bravery and resilience
“The journey through chemotherapy was not an easy one. The treatment, spanning two gruelling months, demanded resilience, patience, and hope.”
I needed two types of chemotherapy - carboplatin and etoposide, both of which are used for lots of different adult cancers like breast cancer or prostate cancer. The journey through chemotherapy was not an easy one. The treatment, spanning two gruelling months, demanded resilience, patience, and hope. I had a major surgery to remove the tumour and my left adrenal gland. As the medical team successfully removed the tumour, a part of my story was etched onto my skin in the form of scars.
My battle with infantile left adrenal neuroblastoma was a turning point – a pivotal chapter that shaped my identity. The scars on my body, once a symbol of insecurity, have become a badge of honour that embody my bravery and resilience.
My perspective of my scars evolved over time. In childhood and adolescence, I was quite insecure about my scars on my body. I found it difficult discussing it with friends, not out of shame, but from the desire not to be defined solely by my battle with cancer. As years past, my perspective shifted. The once hidden scar began to bear a different weight – not of insecurity but of empowerment.
In a world where appearances often carry weight, my outlook on my scars became a beacon of self-acceptance. The scars became a symbol of my unique journey which I am proud of. I draw parallels to the character Harry Potter, whose lightning bolt scar carried a story of its own. This comparison, light-hearted as it may be, encapsulates the essence of my journey – a journey of embracing the past, embracing the scars, and owning my story with pride.
My treatment ended - but didn’t stop
Zahra needed regular check ups throughout her childhood.
Thankfully, I didn’t need radiotherapy and my treatment ended after the surgery. But it didn’t all stop after the treatment. Up until the age of 18, I had to attend regular check-up appointments at Great Ormand Street Hospital because of the chemotherapy I endured.
When I was finally discharged in 2019, I met Dr Antony Michalski who treated me after the surgery in 2002. That was such a surreal experience and is a poignant reminder of the enduring impact that healthcare professional has had on their patients’ lives. Now I currently seek check-ups at UCLH, which is vital in monitoring my health and ensuring my continued well-being after chemotherapy.
My parents are my unsung heroes
“While the spotlight often falls on the patient, it is the parents who shoulder the weight of worry, navigate uncharted territories, and provide unwavering love and care. ”
Truly, the unsung heroes of my journey are my parents - Zareen and Naveed. For them, it was a journey through darkness, a harrowing experience that still lingers in their hearts. My mother’s memories carry the weight of pain, at the tender age of 29, she faced the daunting reality of my diagnosis – a reality fraught with confusion and the profound unknown, I can’t imagine it. My two year - long hospital journey demonstrated the fortitude of my family. My parents navigated the intricate web of medical treatments, emotional turmoil, and the challenges of parenting as I have two older siblings.
Amidst the storm of childhood cancer, their unwavering courage, resilience, and selflessness shone as guiding beacons.
While the spotlight often falls on the patient, it is the parents who shoulder the weight of worry, navigate uncharted territories, and provide unwavering love and care. Their sacrifices both seen and unseen, transcend words, embodying the essence of true heroism. My gratitude to my mum and dad is palpable and I couldn’t thank them enough for their dedication and love that was given to me throughout my life.
a heartfelt sense of connection
“The resonance is undeniable; I see myself in those stories, a confirmation to the shared experiences that bind individuals facing similar battles. ”
In a time before the digital age, my parents endured the isolation that often accompanies such journeys without the vast network of online connections. I know that seeing the amazing stories shared by Neuroblastoma UK would have really helped my parents back then.
Despite the daunting nature of the journey, my parents exemplified remarkable openness from the very beginning. Their transparency fostered an environment where discussions about my health were embraced rather than avoided – a testament to their commitment to navigate the challenging terrain together as a family. The key advice would be to not put all the weight on your own shoulders - your friends, family and charities like Neuroblastoma UK are there to help.
Sharing my story
Zahra graduated with a law degree in 2023
My friends, a testament to the strength of genuine relationships, proved to be pillar of support as I began to share my journey. Their acceptance, empathy, and unwavering encouragement solidified my conviction that my story was a beacon of hope.
But my impact extended beyond my circle of friends. My desire to make a difference led me to share my story on a larger scale. I had the opportunity to talk to doctors and nurses from Great Ormand street Hospital to share my insight and experiences as a survivor. It was such a blessing to help clinicians and patients.
Reading the stories on the Neuroblastoma UK website evokes a heartfelt sense of connection with me – an affirmation that these stories, once distant, now mirror my own journey. The resonance is undeniable; I see myself in those stories, a confirmation to the shared experiences that bind individuals facing similar battles.
For me, this endeavour transcends personal recognition; it is about extending a helping hand to others traversing a similar path. My motivation is rooted in the possibility of making a difference in even a single find. If my story can offer solace, inspiration, or guidance to just one person or family, I find immense fulfilment in knowing that my experiences have made a positive impact. This perspective embodies the spirit of selflessness and compassion, underscoring the profound influence that sharing our stories can have on the lives of others. It's a reminder of the strength that resides in the shared human experience and the potentional to spark hope and healing through the power of shared stories.
Wear a Gold Ribbon to help scientistS continue their life-saving work
I was part of a European infant neuroblastoma study - donating just £2 to Neuroblastoma UK and wearing a Gold Ribbon this September can help scientists continue their amazing, life-saving research.