Paediatric Cancers of the Central Nervous System

Jim Shannon Excerpts

Monday 22nd October 2018 Commons Chamber

[Chris Elmore]

I entirely agree with my hon. Friend. I pay tribute to him for the bravery that he and his wife, Rebecca, have shown over William. I am so pleased to see pictures of him now looking so well and on the road to recovery.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing forward such an important issue as an Adjournment debate. We have some three hours to complete the debate, so he has tons of time. About 400 children are diagnosed with a central nervous system tumour in the UK each year, accounting for a quarter of all childhood cancer cases. Like the hon. Gentleman, I salute the doctors, nurses and carers for all the work that they do in looking after these children. Survival rates for other cancers have significantly increased in the past 50 years, but the same cannot be said for brain tumours. Many charities and research groups are working in collaboration to find a cure. Does the hon. Gentleman agree that more needs to be done to raise awareness, find a cure and ensure that parents are fully aware of the key signs and symptoms in babies and young children?

[Chris Elmore]

I agree entirely with the hon. Gentleman. I hope my speech will go some way to highlighting that more work is needed, and to paying tribute to parents and families who have lost children through this horrendous condition.

Cian was first diagnosed with an atypical teratoid/rhabdoid tumour in 2015, when he was four years old. This type of tumour, often called an AT/RT, is a very rare and rapidly growing tumour of the central nervous system. Cian’s primary tumour was found on his spine, with seeds of the cancer also found in his brain. In the majority of cases, AT/RT is associated with a specific genetic mutation, INI1, which can occur spontaneously or be inherited. However, genetic testing in Cian’s instance did not indicate that he had this specific mutation. Cian’s tumour was located on his spine. AT/RTs are generally located anywhere in the brain, but are most commonly found in the cerebellum—the base of the brain—and in the brain stem, which is the part of the brain that controls basic body functions. The fact that Cian’s tumour bucked this trend made a difficult medical situation even more complex. AT/RT was previously thought to have been a type of medulloblastoma. However, it is now known that this is a totally different type of cancer and cannot therefore be treated via the same methods.

Mercifully, childhood cancer is rare in itself. The majority of children who are sadly subjected to this disease are diagnosed with a form of leukaemia. Brain tumours are much more rare, and AT/RTs make up only between 1% and 2% of these cases. I hope this illustrates just how tragic it was that Cian contracted not just cancer, but a cancer of the rarest of forms. This, however, is exactly why we have to do something. We have to do something to remember Cian and ensure that his legacy is that other families may be prevented from suffering a similar fate.