Henry's Story

On December 12, 2022, Henry's life took an unexpected turn when he suffered a fall at school, resulting in a painful lump in his belly. Filled with concern, his parents, wasted no time and rushed their seven-year-old son to the Emergency Department in Geelong. Henry's dad, George, shares the family's story

Following a thorough evaluation by the paediatric team in Geelong, Henry was referred to The Royal Children's Hospital in Melbourne where he underwent a battery of tests, including scans and biopsies.

Just before Christmas we received the heart-wrenching news that Henry had been diagnosed with an intermediate risk neuroblastoma. This cruel and invasive cancer not only had infiltrated his abdomen but had also wound itself around his renal aorta, demanding immediate intervention. George, Henry's dad

In the midst of the holiday season, Henry started his first round of chemotherapy.  Unfortunately, in early February 2023, Henry's condition was elevated to high-risk, a sobering reality that intensified the journey. This was also when challenging dietary changes became a part of Henry's daily routine.

A daunting battle lay ahead for Henry and our family, one fraught with the promise of relentless challenges and uncertainty. The treatment path prescribed involved multiple rounds of intensive chemotherapy to reduce the tumour’s size, followed by surgery and further therapies, including radiation and immunotherapy.  

The journey was gruelling, and the first round of intensive chemotherapy proved to be an uphill struggle for Henry.  On his 3rd round of chemo the complications increased.George, Henry's dad

Henry developed fluid in his lungs and a low blood count which made breathing and mobility unbearably difficult. After additional scans Henry had a surgical procedure to place a drain tube in his lung. His condition improved, but he remained confined to his hospital room.  Henry struggled with isolation and the challenges of a no-fat diet which was prescribed to keep the fluid from building in his lungs. 

Although his condition improved, he remained confined to his hospital room, wrestling with isolation and the challenges of a no-fat diet, which was prescribed to prevent fluid build-up in his lungs.

Despite the small gains in Henry's health, scheduled testing revealed the presence of more cancer within his fragile body. Scans unveiled secondary neuroblastoma growths in his right leg, both lungs, left lymph node, and spine – metastases that had emerged since the initial December diagnosis. This devastating development catapulted Henry into the high-risk category, requiring an even more intense treatment regimen. 

Tragically, on the 26th of March 2023, our brave little hero, Henry, could no longer withstand the relentless onslaught of Neuroblastoma. 

His indomitable spirit and valiant fight inspired all who knew him. His infectious laughter, boundless energy, and unwavering love for dinosaurs touched everyone he met. George, Henry's dad

Henry's legacy stands as a testament to his remarkable spirit. Throughout his journey, he exemplified courage, love, and unwavering resilience, imparting upon us the priceless lesson of treasuring every moment and facing life's challenges with unyielding determination.

Henry's wisdom was truly exceptional for his young age, especially considering the difficult challenges he was going through. He consistently showed great strength, a positive attitude, and an infectious sense of humour. Henry endured his own pain quietly, driven by his protective nature for those he loved especially his mother and sister. Although he was only 7 years old, Henry possessed a profound grasp of life's difficulties.

His wisdom went beyond his years, bringing joy, bravery, and love to all who knew him. His inspirational presence remains strong and lasting in our hearts. George, Henry's dad 

Tragically, Henry's dad, George, knows the neuroblastoma battle all too well.

Diagnosed at 27 after ongoing abdominal pain that was thought to be appendicitis, my own harrowing journey began. After a CT scan, a mass was discovered on my right adrenal gland, leading to surgical removal and a subsequent biopsy that unveiled the diagnosis of neuroblastoma (exceptionally rare in adults). I faced six weeks of high-dose radiation, with specialists offering a pessimistic outlook, predicting a likely recurrence and a limited five-year reprieve. 

Surprisingly, seven years have passed since my diagnosis, with no return of the disease. I continue to be monitored with six-monthly scans.

Notably, after Henry's diagnosis, samples of both our tumours were analysed, revealing a genetic link to this terrible cancer.

My experience, as both a survivor and a father who faced the same adversary, highlights the need for further research into neuroblastoma and underscores the importance of understanding and combatting this disease. It serves as a beacon of hope for future patients and their families, uniting two inspiring journeys in the fight against neuroblastoma. George, Henry's dad

 

Manage Cookie Preferences