Ossie boy's fund
Keeping Ossie's memory alive by raising funds for Ossie Garden's at Watford General Hospital
Keeping Ossie's memory alive by raising funds for Ossie Garden's at Watford General Hospital
A Look Back at Ossie’s Journey
Ossie was first diagnosed in July 2013 with a rare childhood cancer called Neuroblastoma, a cancer of the nervous system. At just 7 years old, his diagnosis was particularly unusual, as most Neuroblastoma cases occur in children under the age of five, with the majority diagnosed before their first birthday.
Before his diagnosis, Ossie led a vibrant and active life. He was passionate about football, participating in an intensive training program and even being scouted by Arsenal and Watford football clubs. He proudly played for his beloved local team, Everett Rovers, having joined at the age of four. Up until his illness, he was playing football five days a week.
During a family holiday, Ossie began to feel unwell. An ultrasound revealed a large mass encasing much of his abdomen. Immediate X-rays and an emergency MRI followed, leading to the devastating news: Ossie had cancer. He was transferred to Great Ormond Street Hospital (GOSH), where he received a full diagnosis.
Further tests confirmed stage 3 intermediate-risk Neuroblastoma. The tumour was large and wrapped around several abdominal structures, but had not spread to his bone marrow, allowing him to begin intensive chemotherapy immediately.
Over six months, Ossie endured six grueling five-day chemotherapy sessions. The treatment was extremely tough, made harder by an allergy to one of the drugs. Despite the challenges, he completed all six rounds. Although the tumour showed only limited shrinkage, he was approved for surgery.
On January 8, 2014, Ossie underwent a ten-hour operation to remove the tumour. Surgeons successfully saved his right kidney, and he recovered well. He then began a six-month course of oral chemotherapy and remained in a state of 'No Evidence of Disease' (NED) during this time.
In July 2014, after completing treatment, scans revealed the cancer had returned. Another tumour had developed. Ossie underwent a four-hour surgery to remove it, followed by fifteen sessions of radiotherapy over three weeks at University College London Hospital. The radiation continued to work in his body for months, with follow-up scans scheduled for March 2015.
Before those scans, the Rays of Sunshine Charity gifted Ossie and his family a trip to Florida to visit the theme parks—a much-needed and deeply appreciated break.
In March 2015, the family received heartbreaking news: Ossie had relapsed for the second time in seven months. He was re-staged as having stage 4 Neuroblastoma and began another intense chemotherapy regimen. The new treatment required hours of intravenous hydration due to its toxicity. By May, scans showed the chemotherapy had not worked, and Ossie now had three tumours.
Doctors changed his treatment plan, but the new chemotherapy was equally harsh. Ossie only felt well for a few days during each cycle. He underwent seven rounds before the treatment was halted. Further scans revealed disease progression—he now had five tumours. With no effective response to chemotherapy, all such treatments were stopped.
Ossie was then put forward for MIBG high-dose radiation therapy at UCLH, followed by a stem cell transplant. Before starting, he underwent another intensive treatment to try to control the disease, which had now advanced to eight tumours. Due to the radioactive nature of the treatment, Ossie had to be isolated, with minimal contact even with his parents. One of his godmothers, Nikki, bravely signed a disclaimer to help care for him alongside his mother, despite the risks.
Six weeks later, scans brought a glimmer of hope: no new tumours were visible. While only one tumour showed slight shrinkage, the others appeared less active. Ossie then returned to Great Ormond Street for high-dose chemotherapy and another stem cell transplant, beginning in mid-December. Unfortunately, this meant spending Christmas in the hospital. The treatment was the most difficult he had faced, and he spent the holiday in a very poor state, with his mother constantly by his side as they welcomed the New Year together.
Eventually, Ossie returned home to recover, awaiting news about a potential new chemotherapy trial. If the NHS could not offer further treatment, the family planned to explore international options in hopes of finding a trial abroad that could help.
A Look Back: Ossie’s Final Year of Courage
In late January 2016, Ossie returned to Great Ormond Street Hospital (GOSH) following a high dose of chemotherapy to undergo a series of MRI, MIBG, and CT scans, along with bone marrow tests. After several anxious days, his family received the hopeful news that his disease had stabilized. No new tumours were detected, and some of the existing eight tumours had slightly reduced in size or become less aggressive. This development allowed Ossie to be considered for a new clinical trial in the UK, generously funded by Cancer Research UK. The trial involved five cycles of treatment—three weeks on, two weeks off—followed by another six-month course.
On February 15th, Ossie began IL2 GD2 antibody treatment at GOSH. It proved to be another grueling chapter in his journey. The daily IL2 injections triggered severe reactions, and after six doses, doctors made the difficult decision to halt them. When the long-term antibody infusion began on day seven, Ossie experienced intense pain in his back and legs, requiring IV morphine, ketamine, and other strong painkillers—none of which fully eased his suffering.
As his appetite waned and he struggled to eat, Ossie was fitted with an NG tube to receive nutrition and medication. He completed the first cycle of immunotherapy and returned home with a demanding regimen of ten oral chemotherapy tablets daily, preparing to return for the second cycle in March.
By early March, however, the immunotherapy trial was discontinued due to its toll on Ossie’s health. Plans were made to transition him to a different chemotherapy trial.
In June 2016, after completing three rounds of the IL2 immunotherapy, scans revealed a mixed response. Some tumours had grown, others had become less active, but most concerning was the appearance of a new tumour in his liver. Although he was considered for trials at the Royal Marsden Hospital, biopsy results unfortunately disqualified him from participation.
Ossie then underwent another aggressive round of chemotherapy in hopes of harvesting stem cells for a further round of radiation therapy. However, the treatment left him extremely unwell, and he developed shingles, which compromised his immune system and made stem cell collection impossible.
Despite these setbacks, there was a breakthrough. Ossie was approved for a T-cell harvest in preparation for a new CAR-T cell therapy trial at GOSH. The harvest was a success, and the cells were sent to the lab for modification, with a hopeful start date in August. Ossie was to become the first patient in Europe to receive this Phase 2 CAR-T cell therapy, thanks to the tireless efforts of GOSH and Cancer Research UK.
While waiting for the modified cells, Ossie underwent additional chemotherapy. Unfortunately, scans revealed further tumour progression, particularly in the liver. He began the CAR-T cell trial on August 11th and initially tolerated it well. However, by September, scans showed that the treatment had not worked—his disease had progressed again.
Despite everything, Ossie’s spirit remained unbroken. He spent precious time at home, attended school when he could, and even returned to the football pitch. When he couldn’t play, he enthusiastically shared his football insights with coaches and teammates. He also began ticking off items from his bucket list, cherishing moments with friends and family.
On October 16th, 2016, Ossie was awarded Man of the Match after playing for Everett Rovers. Though he had been very ill that week following chemotherapy, he was determined to play—and even scored a remarkable goal.
In early 2017, Ossie began another round of MIBG radiation at UCLH. Sadly, the trial was halted after the first round as he became too unwell to continue. Complications from a severe infection led to his transfer back to his favorite ward at GOSH. There, he received a stem cell transplant in hopes of recovering from the effects of the radiation.
Returning to GOSH lifted Ossie’s spirits. He was finally reunited with his siblings, who had been kept away due to radiation precautions, and was warmly welcomed by the nursing staff with a room full of gifts.
Throughout this time, the community rallied around Ossie. Fundraising efforts continued for his treatment and bucket list, and messages of love and support poured in from across social media. Everyone was united in their hope that Ossie would beat the odds.
Tragically, on May 4th, 2017, Ossie passed away.
His journey was one of extraordinary bravery, resilience, and love. Ossie touched countless lives with his strength and spirit, and his legacy continues to inspire all who knew his story.