Albie’s Story
Albie was just 11 months old when he was diagnosed with High-Risk Neuroblastoma. After intense treatment and a septic shock scare, he has now finished frontline treatment and is enjoying his childhood. Leigh-Anne, Albie’s Mum, shares his story…
Diagnosis
Albie was born three weeks early, weighing just 4lb 15oz.
He had a difficult start with feeding and weight gain, but by six months old he was thriving and discharged from paediatric monitoring. For the next five months he was a happy, content baby, meeting milestones and developing as expected. Everything changed when he became unwell with what appeared to be a routine viral infection - temperatures, lethargy and general upset.
Initially, we weren’t overly concerned. But after around seven days, instead of improving, he deteriorated. One night he became extremely agitated and inconsolable. Nothing soothed him. It was clear he was uncomfortable. By morning he seemed brighter, and we took him to his cousin’s first birthday party, hoping it would lift his spirits. He played briefly, then slept through most of it. That evening his symptoms returned. He was unsettled and visibly distressed. He hadn’t opened his bowels for a couple of days, so I began gently massaging his tummy. That’s when I felt the lump.
My husband then told me he had felt something earlier that day but hadn’t known whether to worry. At 9:30pm, I took Albie to A&E. The wait felt endless. Looking around, he appeared less poorly than many other children there. I nearly went home several times. But something told me to stay. The A&E doctor initially wasn’t overly concerned until I mentioned the abdominal lump. His expression changed immediately. We were admitted to the children’s ward for further investigation. Over that weekend, Albie had multiple blood and urine tests and was reviewed by numerous doctors. His condition continued to decline, yet no one could give us answers.
The one investigation they urgently needed, an ultrasound, couldn’t be performed until Monday where I sat beside him in tears as he screamed in pain while the swollen area was examined. I could tell something was terribly wrong. By lunchtime, we were called into a room and told the devastating news that several tumours had been found in multiple locations within his abdomen, including his lymph nodes and an 11cm primary tumour above his right adrenal gland. We were urgently referred to the children’s oncology unit at Leeds. Within a week, Albie underwent an MRI scan, a head CT scan, surgery for biopsy of the primary tumour and insertion of a Hickman line.
Shortly after, we received the diagnosis: High-Risk Neuroblastoma, MYCN amplified. We were told he needed to begin rapid COJEC chemotherapy immediately. Our world changed overnight
Treatment
In true Albie style, he handled it tremendously well. Aside from significant vomiting, his spirits remained high throughout. His little smile stole the hearts of everyone on the ward - nurses, doctors, families.
Even on the hardest days, he found a way to shine.
Halfway through induction chemotherapy, we received the most astounding news: a complete metabolic response. His MIBG scan showed no active disease lighting up. He had gone from widespread cancer in his adrenal gland, kidneys, liver, chest, thigh and bone marrow to no active disease detected.
We were completely knocked off our feet.
But the journey was far from over. Despite no active disease showing in his scan Albie still needed to continue his treatment and next up was a stem cell harvest.
Day one was textbook, smooth and successful, with an excellent collection. Day two started the same… until it wasn’t.
Following a routine line flush while connected to the harvest machine, Albie suddenly went into septic shock. He crashed twice. The room filled instantly with medics. It was the most terrifying moment of our lives. He was stabilised and rushed to PICU, where he underwent emergency line removal and close monitoring overnight. And yet, in true Albie fashion, he was back on the ward the very next day, smiling and playing as if nothing had happened.
Albie then underwent a major 9 hour tumour resection surgery. Thanks to an incredible surgical team, 99% of his primary tumour was successfully removed. We felt so incredibly fortunate.
Two weeks later came the most gruelling stage: high-dose chemotherapy followed by stem cell transplant. Albie spent five weeks in isolation, receiving his stem cells back. This was by far the toughest part of his entire journey. He suffered severe mucositis and skin damage, it was as though he had burns from head to toe. He required multiple blood and platelet transfusions and was fed through TPN as he couldn’t tolerate food or liquid. Five weeks away from his brother and sister. Five weeks confined to one room. But somehow, he pulled through.
Every single day felt frightening and uncertain. By what feels like a miracle, we were discharged on Christmas Eve, home just in time to be together as a family.
In February, Albie travelled to receive proton beam therapy at The Christie Proton Beam Therapy Centre in Manchester. He required a general anaesthetic every day for 12 consecutive sessions. Despite this, he handled each treatment incredibly well, showing bravery beyond his years and a month later, Albie began immunotherapy.
The first course was extremely tough. He experienced intense pain and became quite unwell for the following week or two. Watching him endure that was heartbreaking. But remarkably, the next four rounds became progressively easier. He wore his little pump bag around like a badge of honour - our tiny warrior.
Where We Are Now
Albie has now completed frontline treatment. He is eight months into his two-year course of DFMO. He has experienced some side effects, including weight loss, but thankfully these are beginning to ease.
This summer, Albie turns three. He is at nursery, goes to playgroups, swimming, forest school and soft play. He’s making up for everything he missed during treatment. Watching him do ordinary toddler things feels extraordinary.
We cannot believe what he has endured in such a short life.
Despite everything he has endured, Albie’s spirit shines brighter than ever. He is cheeky, funny, fearless and full of personality - a little boy who lights up every room he walks into. He makes friends wherever he goes, and has a smile that melts hearts instantly. Those who meet him would never guess the battles he has faced behind the scenes. We are so proud of his resilience and bravery - our superhero.
We are grateful beyond words to have him here. And we remain deeply thankful to Neuroblastoma UK for continuing to fund research, trials and medicines that give children like Albie a chance.
Funding vital research. Saving young lives.
We fund vital research to develop new and more effective treatment for children with neuroblastoma. But we need your help. Please donate today and join the fight against childhood cancer.
