Teifi Rowley was diagnosed with cancer as a baby and again a few years later. They tell us about Anniben, a drag character they created that has helped them process the long-term impact of treatment through creativity and performance.
Emily Baker, clinical research nurse at Great Ormond Street Hospital (GOSH) and CCLG member, tells us about her career so far, the most rewarding part of her job, and more.
Raysa Farah’s son, S’aad, was diagnosed with leukaemia aged two. Here, she explains how her and S’aad’s experiences during his treatment inspired her to write a children’s book, empowering both her and other young children with cancer.
A biobank is a store for cancer samples which are then released for research studies. Professor Deb Tweddle, Director of VIVO Biobank, Professor of Paediatric Oncology and Honorary Consultant at Newcastle University and Newcastle Hospitals, and Dr Mariya Geneshka, Research Associate at the University of York, tell us more about donating samples for biobanking, and its importance to improving treatment and care.
Helen Pearson, Advanced Nurse Practitioner in solid tumours, researcher and CCLG member, explains how the findings of a study have helped co-design an important new web resource to support families.
The relationship between oncologists and parents of children with cancer can be complex and unique, with each family having differing needs. Dr Ren Manias, Consultant Paediatric Oncologist at Southampton General Hospital and Contact's medical adviser, tells us how open and honest communication between doctors and parents is key to developing trust and understanding, and why this is important.
Dr Sarah Evans, Head of Research at CCLG, describes what patient and public involvement (PPI) involves. PPI is about researchers and those who fund research teaming up with people who have personal experience with a health condition. This collaboration helps make sure that research focuses on what really matters to the people it’s meant to help, like patients and their families.
Louise Robinson is a neuro-oncology outreach nurse specialist at East Midlands Children’s and Young Persons’ Integrated Cancer Service. Here, she emphasises the importance of collaboration and explains how a support pathway helps young patients with their education.
Diffuse midline glioma is a devastating brain tumour, affecting primarily young children. There’s currently no cure for this disease and treatment options are limited. This is mainly because this type of tumour is well-protected from drugs by the ‘blood-brain barrier’. This barrier physically blocks all medications from entering the brain. Our group has developed new methods of bypassing this barrier using focused ultrasound.
