Isaac's Story
Isaac's family visited Ben's Retreat in September 2023.
Isaac was diagnosed with Ependymoma a rare type of brain cancer when he was 5 months old in March 2017.
Isaac underwent a major life saving operation to remove the golf ball size tumour from his brain stem. His incredible neurosurgeon removed 100 percent on the tumour and that was just the beginning of Isaac’s fight against cancer.
In April 2017 he began chemotherapy at Great Ormand Street Hospital. Isaac finished Chemo after 13 months and in May 2018 our amazing warrior rang the end of treatment bell. We were so thankful, relieved and proud beyond words of his courage and fighting spirit.
Sadly Isaac’s first post treatment scan showed had 2 new tumour’s in the original spot. Our world and hearts were shattered. I was pregnant with Isaac’s younger brother and sitting down to brake this devastating news to him that this fight wasn’t over yet was heartbreaking.
Dad and I sat them down to explain Isaac’s cancer was back and we all cried and held each other tight.
Isaac was only 18 months old and was too young to understand like his siblings. All Isaac knew was hospital life, he had spent more time at hospital than he had at home this broke our hearts all we wanted was to be a family but cancer had other plans.
In May 2018 Isaac had a second major life saving operation to remove the 2 tumours from his brain stem with full GTR.
Once Isaac recovered from his operation We as a whole family flew out to Germany where Isaac received 33 rounds of proton beam therapy (radiation).
Isaac is truly our real life superhero we tell him all the time he has real super powers like superman. Isaac’s superpowers are his strength, courage and bravery!
In September 2018 Isaac finished protons treatment and rang the golden end of treatment bell we flew home Isaac was now in remission NED and shortly after we celebrated his second birthday.
We as a family knew we could never go back to how things were before Isaac got poorly but we could build a new normal.
We had almost 2 of the best year’s until Isaac’s oncology consultant called during the pandemic and we received the devastating news Isaac’s cancer had returned. It just wasn’t fair I wished so much I could take his place he was just an innocent bany and didn’t deserve this no infant, child or teenager deserves this.
At the hospital I was understandably terrified but Isaac was so brave I remember looking at him and thinking how can any 3 and a half year old endure so much and be so resilient.
After Isaacs operation his surgeon came to speak with us to let us know he had again managed to remove 100% of the tumour we were so grateful beyond words can measure again Isaac was in remission. That was three years ago.
Isaac has currently been 3 years in remission we’ve learnt to live in the present and make everyday count.
Isaac continues to amaze us every day he is a happy, cheeky, smart, kind and caring (on 24th September he will be 7)
He has so much love for life his he is such an inspiration to our family he is our real life hero 💙
Thank you to everyone at BSF for this break