Welcome to Ben’s Epic Journey. We are a family of five, being blessed with three children; Ella, Ben and Rose. We’ve called this blog ‘Ben’s Epic Journey’, as Ben often used the gamer tag ‘BenIsEpic’ 🙂
In late June 2018, our Ben was diagnosed with AML, an acute form of Leukaemia, and was then in hospital long-term. We subsequently learned that the cytogenetics of his AML indicated that chemotherapy alone would not likely give him the best outcome, so he went on to have a stem cell transplant in October 2018. In addition to AML, he was also diagnosed with Lyme Disease, which he was duly treated for.
Ben’s care throughout was shared between Piam Brown ward in University Hospital Southampton, and Queen Alexandra Hospital in Portsmouth and latterly Bristol Children’s Hospital, before we headed back in Spring of 2019 to Portsmouth and finally back to Piam Brown, then home.
We are a family of five. Forever.
We are eternally grateful for Ben’s care, for the time afforded us, through the complete act of kindness by one amazing Angel in the world; Ben’s stem cell donor. It meant he got to come home for a few months, following his transplant and enjoy a little more normality, however brief.
It was never going to be long enough, now we are living without him, but his transplant, that gift from a stranger, gave us a little more time for giggles, for cuddles, for wise words and wit, for moments of magic and for one more birthday.
From a journey of hope, of recovery and into grief; we will always wish the outcome could have been different, that we could have had more time, but the time we had all together, my goodness, we have been so blessed.
Please enjoy reading this blog. We hope you feel inspired to do all you can to reach out to others, to inspire kindness. Be a trailblazer, be a visionary, a creative and kind soul, a beacon of light for others, as our Ben has been for us.
I have started a podcast called ‘Family of Five’ on http://www.podbean.com, which I hope will help others, as we try to keep putting one foot in front of the other, keeping Ben with us, ever present in our lives.
Love you, Ben xxxxx