Our children’s stories
We are proud to support our brave children with brain tumours, these are some of their stories.
In December 2014 at 18 months-old Grace was diagnosed with medulloblastoma and underwent six months of gruelling chemo. In November 2015 Grace relapsed and the tumour came back. Grace underwent six weeks of radiotherapy and a further six months of chemotherapy. Grace is now a happy, healthy seven-year-old girl who loves Disney princesses, unicorns and above all she adores dogs.
Paul* was treated with surgery, chemotherapy, and radiotherapy. Whilst treatment saved Paul’s life, he was left with hearing loss in both ears, learning disabilities, communication and movement difficulties, as well as problems managing his emotions. Paul will need support throughout his life. Ongoing cognitive assessments measure how Paul’s brain is developing and help our team build support strategies going forward. The support Paul receives has helped his family “get their boy back”. *Name changed at family’s request. Paul is seen here on the left with his brother and sister.
At the age of 11 months Freddie was diagnosed with right sided temporal low-grade glioma (brain tumour). Surgery left Freddie with left sided hearing loss and left sided weakness, which has improved with time. Freddie is a now cheerful and happy 10-year-old boy who loves football, but has been left with some visible effects of his tumour. His brain finds it harder to take in information at the speed that his healthy school friends can, making learning harder. Freddie was provided with neuropsychological evaluation and eventually was diagnosed with a mild acquired language disorder. This means that Freddie’s school and family will be provided with information that will help them communicate with Freddie.
Camille was diagnosed with an ependymoma brain tumour aged 26 months, in 2009. Camille underwent two years of gruelling treatment that included high dose chemo, three brain tumour resections and a programme of aggressive radiotherapy. At such a young age, this had a devastating effect on Camille; she became incredibly anxious, she struggled to trust anyone outside of the family and would easily become agitated if she had to attend hospital.
Camille’s dad Martin said: “We can not put into words how grateful we were for the intervention of Tom’s Trust. Camille finally had a dedicated team, with a set of unique skills that were able to support both Camille and the wider family. Camille has many hidden issues that many professionals fail to understand. The team at Tom’s Trust developed an understanding of Camille’s needs and worked with her to help maximise her potential and develop the skills needed to cope with difficult situations.”
Watch Martin and Camille speak about Camille’s diagnosis
Anonymous case studies
At the age of 12 years, B was diagnosed with a large germ cell (brain) tumour and associated obstructive hydrocephalus. B underwent surgical resection of this tumour followed by chemotherapy and focal radiotherapy. Routine neuropsychological assessments measured B’s cognitive development whilst identifying areas of strengths/weaknesses. In turn these results helped reintegrate B back into the classroom and tailor learning strategies.
B said: ‘I found the puzzles helped me understand and interpret how the treatment may have affected me. It was also reassuring that the difficulties I had in class weren’t just me and I was able to get support.’
Now 17 years-old, B is doing a training course at college, and working in hospitality as part of his course. He is really enjoying it and we wish him all the very best for his future career!
C was diagnosed with a high-grade posterior fossa tumour (metastatic medulloblastoma) and obstructive hydrocephalus at the age of 10. C underwent complete surgical resection of the tumour followed by six weeks of craniospinal radiotherapy as well as high dose chemotherapy. C was seen two years following this treatment to measure his cognitive development and identify any areas of cognitive difficulty.
C said: ‘I found the puzzles fun and exciting! It was useful to know how I think and how treatment may have affected me.’
The results of his neurocognitive assessment were discussed with his school and learning strategies tailored to support his studies. His teachers found this very helpful. We wish C all the very best for the future!
Share your story
If you would like to share your story, please contact us.