All deaths are different, like births, and obviously reflect the infinite variety of medical, personal, emotional and mental circumstances of the individual and family. My son David, DD as we called him, was diagnosed with a cancerous brain tumour called a medulloblastoma in October 2007, aged 11. When David was diagnosed his cancer had not spread. Therefore, our expectations were that he would be in the lucky 75% who make five years at least having finished his 15-month long chemotherapy and radiotherapy protocol. Unfortunately, due to late diagnosis, DD had to cope with 10 extra brain operations. His first relapse was September 2010. Then we got spectacularly lucky: the palliative chemotherapy he took removed all the tumours down his spine within weeks. He was officially declared in remission in time for a stem cell rescue the following March. Unfortunately, it didn’t work. His final relapse was May 2012 and he died in the August, aged 16 with severe dementia alongside multiple spinal tumours.
Nothing will ever be as painful as letting DD go but I know that having achieved an excellent death for DD, with our team led by Southampton General but encompassing Salisbury District Hospital and our local GPs' surgery, is without doubt the single biggest achievement of my life and it continues to be an immense consolation. But how on earth did we do this? I know people cannot imagine how we even got our heads into a place where we could decide to take him home after his final relapse? What gave me the confidence to know I could manage my child's death at home?
"Just follow the child" was what my friend had said when talking about the home death they achieved for their six-year-old with the same cancer. Her son had died with his young siblings all present and when I heard that I thought, if she can do it, I can do it. I know that's right: for death to be a big event but one within the framework of a normal family life. This was what I needed, the reassurance I could do it and I was not alone.
'Following my child' meant focussing on everything DD loved. That instantly meant home not hospital. We chose with our team a treatment plan of palliative drugs at home to remove the symptoms of his disease but positively rejected any like chemotherapy or even steroids that would prolong his life with such a ghastly disease and might mean facing uncontrollable pain. Stopping curative treatment was not giving up hope and being negative. True, the hope that we previously had that his cancer would be overcome had to be redefined after his second relapse. Our new hope was for DD to have the best time possible at all times! He loved home, studying science, flying birds of prey, playing with his sister, arguing with his younger brother, watching movies and talking to his friends - that was how he wanted to spend his time. The last thing DD wanted was to be treated as a dying cancer patient.
Fear was my main enemy - the temptation to deny what was happening and that the disease was going to cause the death of our beloved son but also fear of the process of death. I know now that is mostly fear of the unknown. The way I tackled it, was to tell the palliative-paediatric-oncology specialist nurse what I was scared of. The meeting was to plan so that we always had the equipment and medicines needed in advance of any possible crises. To keep DD calm and comfortable at all times required me to know what to expect, rather like when you give birth. It was so painful to face but within an hour the relief poured out of me as I understood: what to do with seizures; whom to call 24/7 and the paperwork in place that meant an ambulance called to our home was not allowed to take him to hospital or perform CPR, only to stabilise him, as to have done otherwise would have increased his suffering and ruined his quality of life.
The morning DD died my husband and I and his brother were there with our nurse. His little sister had gone on a birthday sleepover that night. I know DD was completely happy as the last lucid thing he had said four days before was “I love it here”'. We knew we'd done absolutely the best job for him.
What I really want people to know is that you must not fear; grieve, yes, the grief of letting your child go - of understanding and accepting - but not fear death itself. You are not alone. The mum who reassured me said: the death was okay. They stop breathing and their long suffering ceases. The pain of grief is not. Yet I feel so lucky that I was there to know DD was okay. I wouldn't say I was in control, any more than I had been for his birth but I did feel empowered by having made positive decisions and understanding what was happening - we weren't just being dragged by medical events. The hard bit now is to do what he asked which was to carry on with our lives and be alright - a life's work I'd say!
Sacha, David’s mum and Lead Champion for The Brain Tumour Charity's HeadSmart Campaign