Teddy is a 4-year-old from West Sussex who is obsessed with anything to do with trains! He loves riding trains, going to the station to see the trains, playing with his train set, and watching Thomas and Friends. He is a very funny and clever little boy, and is always known by the nurses and doctors for being chatty and singing the Thomas theme tune!
In July 2022, Teddy was diagnosed with high-risk neuroblastoma, a rare and aggressive childhood cancer that has a 40-50% chance of long-term survival at diagnosis.
His parents, Katherine and Alastair, started fundraising to fulfil their wishes for Teddy to access the DFMO study at Penn State Children's Hospital after he finished frontline treatment, with the hope of keeping the cancer away. Thanks to the incredible support the campaign received, Teddy was able to enrol on the study in February 2024.
Teddy’s campaign remains open in case he needs potentially life-saving treatment in the future not available through the NHS, which could cost hundreds of thousands of pounds. Follow his story on social media.
In June 2022, Teddy had just turned 3 and become a big brother to baby Rupert. Throughout the summer the family made multiple trips to the GP with Teddy due to fevers, discomfort and crying at night - first, it was tonsillitis, then an ear infection, which both cleared up with antibiotics. He was lethargic and had a low appetite but that wasn't unexpected given the infections. Then on 26th June, Teddy said 'my sides hurt' for the first time.
The next day Katherine took him to the doctor who examined him thoroughly and was happy with his condition. Afterwards, Teddy spent hours running around and playing at soft play like every other child. During the night, he cried continuously whilst his mum held him and moaned 'mummy I'm tired, mummy it hurts'.
'I knew something was very wrong, says mum Kat.
Teddy's dad Alastair took him to the hospital the next morning where he was admitted with suspected appendicitis but discharged the next day. However, a few days later the pain came back and he was once again admitted after going to A&E. After a few days when his infection markers were rising, but no source of infection was found, he had an ultrasound.
'A consultant walked into the room and whispered to the ultrasound tech 'where did you see the mass?' and my heart stopped. The next day he had blood tests and an MRI, and we were told our precious boy had a type of cancer called neuroblastoma and our world shattered. That night I cried so hard I thought my heart would break in two.'
The next weeks were a blur of biopsies, scans and blood tests. Teddy's parents were told that his neuroblastoma was metastatic high-risk, with only a 40% chance of survival at diagnosis. Teddy and Alastair spent nearly five weeks moving between three hospitals, while Kat bounced between various hospital accommodations and home with their four-month-old before Teddy was finally discharged after his first round of induction chemotherapy.
Since diagnosis, Teddy has had a central line fitted, a biopsy, multiple general anaesthetics for bone marrow aspirates and scans, 14 NG tube insertions, six gruelling rounds of induction chemotherapy and multiple admissions to his local hospital for fevers. He was also randomised on a trial to receive a tandem transplant, which meant he had two stem cell harvests, two rounds of high-dose chemotherapy and stem cell transplants. The trial that he was on also meant he had been randomised to receive additional radiotherapy to his primary tumour, which couldn't be removed with surgery due to its position, so he had 20 days of radiotherapy instead of the standard 12.
Teddy completed radiotherapy, and after scan results showed his primary tumour was still not resectable, he started immunotherapy treatment in July. Scans during immunotherapy confirmed his tumour was still metabolically active.
In January 2024 Teddy completed frontline treatment. Whilst initially it was believed that end-of-treatment scans showed some reduction in disease, further analysis of his scans by his treating team confirmed that Teddy had had a complete response to treatment and was considered NEAD (No Evidence of Active Disease). A biopsy of Teddy’s tumour was also taken which came back showing no active cancer cells, only ganglioneuroma cells (non-cancerous).
At the beginning of February, the family travelled to America to enrol on the DFMO study at Penn State Children’s Hospital, thanks to the incredible support of those fundraising and donating to Teddy’s campaign. The family will travel to America over the course of the next 2 years for treatment.
Funds raised will go towards helping Teddy and his family. If Teddy no longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with high-risk neuroblastoma, like Teddy, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.
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