Jacob's Story

Jacob has been struggling with his eyesight and his temper from the age of 2, as time goes on his eyesight gets worse and so does his behaviour.

In in March 2023 Jacob went to the hospital for his routine eye appointment, again his eyesight had worsened and when they looked at the back of the eyes they noticed his optic nerves looked thin.

An emergency MRI scan was done and we were told that Jacob has an "Optic Nerve Glioma" which is a low grade brain tumour. Due to the location of the tumour he needed to start chemotherapy for 18 months, this won't shrink the tumour but it will hopefully stop it from growing, because if it grows then he will completely lose his eyesight.

We have been seen at Alder Hey for numerous tests, they have fitted Jacob with a portacath and he is thankfully nearing the end of his chemo journey, they are incredible and we can't thank them enough. We are so proud of Jacob he has been so brave.

I (mum) have also had cancer. It started in Dec2021 I'd noticed blood when going to the toilet so immediately made an appointment with my GP, not thinking it was linked to anything sinister as I had no other symptoms whatsoever.

She examined me and couldn't find anything so she put me on the 2 week cancer fast track service, I was contacted quickly by Royal Stoke and my appointment was 20th January 2022, that morning Sean's dad sadly passed away but Sean still took me for my appointment and I was told the same day, during my appointment, that they could see signs of cancer.

Things moved very quickly, royal Stoke were amazing. Biopsies were taken to confirm that the tumour is cancerous and in March 2022 I was having an operation (anterior resection) to remove the tumour and part of the bowel, I'm still trying to get used to having a smaller bowel, it's definitely impacted my daily life. Lymph nodes were taken during the operation and they confirmed that the cancer had spread to lymph nodes so I had stage 3 bowel cancer. I had 4 cycles of chemo which started in June, it was the worst time of my life but I was lucky to have Sean by my side, he took time off to look after Harrison and Jacob and I couldn't have got through it without him.

I was given the all clear in September and I rang the bell. I have since been diagnosed with a condition called MUTYH Associated Polyposis (or MAP for short) which basically means I have two copies of a faulty gene inherited from my parents and I am at a very high lifetime risk of developing multiple cancers, therefore I'll be under yearly surveillance for the rest of my life.

Thank you to Ben’s foundation for this lovely break away.