Tomorrow morning is the last dose of steroids for this month. Until April 2020 Dylan will take dexamethasone twice a day for five days every month & frankly it would be an understatement for me to say that steroids are a test of everyone’s patience, strength & mental wellbeing. Dexamethasone is a steroid that is … Continue reading Love But Mostly Hate

I am so tired. At the start of this journey I spend every night next to Dylan in his hospital bed until he is allowed home; fifteen nights lying next to my little boy who has just been diagnosed with cancer. I do not really sleep, I have become hypersensitive. I watch him throughout the … Continue reading Running on Empty

Dylan is due to have his eighteenth lumbar puncture to receive the drug methotrexate intrathecally this Wednesday. He will be given his twenty sixth general anaesthetic, a needle will be inserted into one of the spaces between the bones of his lower spine & the drug will be injected in order to prevent cancer cells … Continue reading This is Chemotherapy

Well, it was not the start to the New Year that I had hoped for. On 4th January 2018 Jill Williams, Nick’s mother (Dylan’s grandmother) passed away. She had non Hodgkin’s & Hodgkin’s lymphoma & as I mentioned in my previous post had been battling cancer on & off for the last twenty years. Recently … Continue reading A Dark Day

This tightrope stretches across the deepest abyss, into a blinding & indeterminate blizzard. The strength needed to walk it is phenomenal; it requires constant micro managing of reality versus my mind. I feel as though I am no longer myself, I have to focus hard in order to behave as rationally as possible for my … Continue reading The Tightrope