In February this year my 14 year old son Terry was unexpectedly rushed to kings hospital for an emergency surgery. A ct scan showed an tumour was present and it was blocking the flow of fluid throughout the brain. A new path of fluid was created and a biopsy taken. 9 days later we received the devastating news that Terry had a very rare and aggressive brain cancer, a pineoblastoma grade 4.

Terry had a second surgery a few days later to remover the tumour. Terry’s 14 hour surgery was successful but what was supposed to be a two week recovery turned into a very long road. Terry woke from his surgery unable to walk, talk or eat. His brain knowing what he wanted to do but his body not responding must have been terrifying for him. Terry spent 6 weeks at kings hospital having intense therapy. Terry then had another surgery to fit a peg so he could be fed and a port to prepare for chemo. While he was still unable to communicate or walk we were transferred to UCLH. Terry then went on to have radiotherapy and chemotherapy 5 days per week for 6 weeks. The treatment was brutal with lots of sickness but Terry pushed through and proved just how strong he is.

Terry got a 6 week break from treatment and finally got home after 13 weeks, although in this break there was still many scans/ test to check the effects of treatment.

Terry is now on an 6 round course of chemotherapy finishing in November.

He continues to work tirelessly on building his strength, he can now walk with a frame and talk.

As a family this has been the most heartbreaking journey. Being so out of control and faced with our worst possible fears. Young Terry has surprised us at every turn and has shown so much maturity, his strength has pulled us all through this unimaginable journey.

We have been helped by so many charities on this journey, from being housed in London, treats for terry and guidance. We have been overwhelmed by the help available and shocked by the amount of families in this devastating situation.

In light of this I will be running the London marathon and Sam will be walking from London to lands end to raise money for children with cancer.

We are so proud of Terry, he is a inspiration to us all

#teamterry ❤️

UPDATE - Terry finished his treatment in December, 6 rounds of chemotherapy was brutal on his body and he had a few set backs with his walking and generally became very weak.

But as always he has shown such incredible strength and continued to work hard. We are so proud of him.

Terry received a clear scan in January and will receive scans every 3 months.

He is working tirelessly to build his strength, he has started park time back at school, he’s eating, no longer using the wheel chair and doing incredible

Thank you so much for all your kind words, donations, shares and separate fundraising that has been done to support Terry and children with cancer it is a cruel disease.

We could not have battled through this year without the amazing support of our family and friends ❤️ I am forever grateful

Terry is doing amazing

Our vision is a world where every child and young person survives cancer.

For 35 years, Children with Cancer UK has funded much needed research into the causes of childhood cancers, and the development of better, kinder treatments as well as funding initiatives that support children and their families through cancer treatment and beyond.

Our work has contributed significantly to a marked increase in childhood cancer survival rates and improved quality of life for patients.