Ben will always be our youngest son, a happy, healthy, fun loving boy and best friends with his elder brother, Luke. However it was a month after his 9th birthday party that our whole world began to crumble, Ben suffered a little seizure which became one of many over the next few days.
We took Ben straight to hospital. Before we knew it, Ben was going through a myriad of examinations, tests, scans and under went a biopsy. A few days after the biopsy we were given the results. My wife, Su and I got the news, that as parents we had hoped so hard not to have to hear. Ben had a malignant brain tumour, in other words, cancer. Words can’t adequately describe how we felt at that point, distraught, devastated, shocked, angry; all of these and more. But most of all we felt that we’d stepped into another world in the space of a few seconds, one where we had no experience, no compass to guide us and nobody to turn to. Almost immediately, Ben began a course of Radio and Chemotherapy along with a cocktail of drugs to control his seizures. In the midst of this, Sally and Ally came into our lives.
Sally and Ally are CLIC Sargent nurses, and they provided so much more than just medical advice. they guided us through how we told ben’s older brother luke about what was happening, explained to us about the effects of radio and chemotherapy, helped us to navigate the never ending nhs maze and supported us through some of the darkest hours anyone can imagine. but most importantly of all they were there for ben. it was thanks to sally and ally that ben was able to have blood tests and much of his treatment at home rather than in hospital. it was also thanks to sally and ally that ben understood and wasn’t scared of any of the treatment that he was given, they were always honest, but they always cared about and intuitively knew how precious and desperately ill our little boy was.
Ben bravely fought the tumour that was continuing to grow in his brain. But in December 2011, 8 months after his initial diagnosis, the doctors sensitively told us that there was no more that could be done, the Chemotherapy had to be stopped. It was at this point that Sally and Ally stepped up even further. With their help, Ben remained at home until he passed away peacefully in our arms on 23rd February 2012, surrounded by those who loved him most. Sally and Ally visited us 3-4 times each day towards the end. Together, we'd made sure that Ben didn’t have to cope with any scary machines or have people around him that he didn’t know. And they cared deeply about Su, Luke and I, they were always quietly there for each of us when we needed them the most, intuitively understanding what we were going through and making sure that we were prepared for what we had to face. They are still there for us now, just making sure that we are doing OK and helping us with each stage of what, at times feels like a never ending wave of grief.
Lots of children do recover from cancer but some, like Ben, don’t.
12 families each day in the UK are told that their child has cancer – that’s 12 more families like mine who will desperately need the help of CLIC Sargent.
Thanks for taking the time to read Ben's story - Nige Crutchley