We’ve had a very difficult sixteen months and in early July, it was confirmed by Doctors, that our beautiful son, Benjamin had relapsed with Acute Myeloid Leukaemia, following last October’s stem cell transplant. This was a devastating blow, after he had been doing so well in the Spring and we’d had such a lovely, gentle time, once he was home just before Christmas last year in 2018.
Leukaemia is relentless and aggressive and left untreated, is brutal and quick to take control of the body. Ben underwent a further round of chemotherapy in the hope that he would be brought back into remission and for a few days, it looked like it had worked. However, I noticed that his gums were still swelling and slowly growing down over his teeth in the following few weeks and it was found that he actually had a refractory relapse, meaning that the Leukaemia had mutated again and differently and was therefore resistant to chemotherapy.
As I sit and write this now, it still feels so surreal. I do not want to speak of loss, or a battle, or fight. Cancer is indiscriminate, it doesn’t care who you are or how much potential you have. I haven’t lost Ben anywhere. If I had lost him, I would spend my life searching for him, knowing he will never be found. When people use the term battle for cancer, it feels like it is something you are suddenly thrust into a boxing ring with and in some ways, yes, by the reality of what happens, in some terminology, you are therefore fighting for your life. To me, fighting cancer isn’t necessarily the right wording. Cancer happens. It seems to be caused by many and any amount of ‘events’ that happen in a person’s life, by cellular changes, exposure to particular environments and sometimes made worse by a lack of nutrition. There seems to be no one thing that causes cancer, at least, not AML, although there are studies into the connection between Lyme Disease and cancer, something Ben also had running alongside the Leukaemia.
We were told that Ben had just been incredibly unlucky. I don’t like that terminology either; that makes it all feel like there was never a hope for him recovering. In my heart, there was always hope, right up until the point there wasn’t. I was not going to give up on Ben at any point and I hope, looking down from the skies, or wherever he is now, he knows I did all I could for him right up until he left us and I will never give up hope. Hope of a cure for cancer, hope of it never existing in the future. I will never give up on his dreams and will do all I can to ensure that I help others in whatever way I can to help realise Ben’s wish of helping others in his absence.
My son came home one last time on a Friday night, late in the evening and after a difficult night, he died in my arms the following afternoon. I cannot express the love and the privilege I feel to have been his mum and James, my husband and our two girls will never be the same again without him.
He was such a funny, warm-hearted, gentle and kind soul. He had just celebrated his 12th birthday in hospital with a few close friends and his family and six days later, he gained his Angel wings.
I am so heartbroken and full of grief and love for a boy who will never have the chance to grow up and who will never have the opportunity to live out his dreams of becoming a writer and director of films.
In the weeks that have passed, I have launched my debut novel, with a heavy heart and wondered what I can do to keep going. Some days it is near impossible.
Last week, I had the opportunity to head away for a few days to Devon and join the Urban Writers Retreat, which I did. I wasn’t sure how I would feel, given I spend some of every day at the moment in tears. However, it was very much the right decision and I have been able to really make some headway on Ben’s story and our family’s experience through childhood cancer with hope and into grief, while being surrounded by great company in fellow writers, creativity and fabulous food.
You can find more information on the Retreat here: www.urbanwritersretreat.co.uk
I never thought I would ever become a bereaved parent; it feels very much out of the order of life, but here I am, broken and feeling very alone some days.
I ran the Great South Run last week to raise awareness of DKMS, the charity who have supported us throughout and who work tirelessly to help bring more people onto the stem cell register. As I ran the course with my dear friend, Jane, we handed out DKMS Rocks, painted stones with Ben’s name on, to carry on his quest to help others in his name. You can find DKMS Rocks on Facebook.
It was just the day after, that I set off with sore limbs to drive the 3.5 hours to Devon and find solace in my writing.
Coming away really helped me focus and I am happy to be back home with my girls and hubby today. Writing is the outlet that I can really show my authentic self. It gives me the strength and courage to keep going through extraordinary times, in the desire to help others.
The hardest thing last night, was when I headed up to Ben’s bedroom, where the silence was deafening. I kissed his pillow, shed tears and promised to always do my best for him and his sisters throughout my life.
Love you, Ben xxxxx