In September 2007 our family was complete when our beautiful son Lewis was born. Lewis was a happy, healthy baby and a little brother for our daughter, Georgia. In May 2008, weeks after returning from a family holiday in America, Lewis became unwell. His right eye had swollen and our GP was convinced it was nothing more than hay fever or an eye infection. The swelling got worse and eventually Lewis was admitted to a local hospital when he started with a high fever. We spent a week having various tests and observations, when finally they performed a CT scan. The scan showed a large mass that was explained as either a tumour, inflammation or infection. We were immediately sent to Birmingham Children’s Hospital where Lewis was diagnosed with an aggressive childhood cancer called Neuroblastoma. Further diagnostics confirmed the cancer was MYCN amplified which meant that the tumour contained a gene that ‘amplifies’ the cancer, making it more aggressive and also giving an unfavourable prognosis.
We tried to remain positive as we began our long and very emotional journey. Birmingham Children’s Hospital became our home, spending many nights on camp beds and surviving on microwave meals. However, Lewis took it in his stride, charming every nurse he met and always smiling. We learnt so much from our little boy and he was the one who inspired us to remain positive.
Lewis responded well to chemotherapy and towards the end of the treatment his scans showed no evidence of disease. All that he had left to complete was a six-month course of oral drugs which were taken at home. However after the fifth month Lewis showed worrying signs of relapse. Almost a year to the day after his initial diagnosis, further scans confirmed the cancer was back. I think that hearing he had relapsed was far more emotional for us as a family than hearing his initial diagnosis. We knew at the time there was no cure for relapsed Neuroblastoma and we were facing a very uncertain future. However, there were some treatment options available to us as Lewis had responded so well to his initial chemotherapy.
Lewis also responded well to the new treatment but not as well as we had expected. In January 2010 we were told the devastating news that Lewis could not be cured, and that any treatment he would now receive would only be palliative. He still had a couple of options available to him and although palliative we travelled to London for radiation therapy. Whilst we were there further scans showed the Neuroblastoma had progressed much more than we had expected, it was now in his spine and brain. We were sent home to receive some external radiotherapy to his brain which he received daily for five weeks. But six months after being told he was terminal our beautiful, brave boy passed away peacefully on 3 July 2010. A day that will remain embedded in our souls forever.
When I look back at our journey we were very positive as a family. We knew only too well how serious Lewis’ condition was and from the start we knew his prognosis was poor. However, this was our son, we had to have hope and we had to believe that he may be able to get through this. We found that we used humour and positivity as a coping mechanism to get through each day because it helped. We find that even in bereavement we still use this strategy as it works well for us.
During our journey we met and became close to many wonderful families in the same situation as ourselves. Some of the children we met are now in remission but there are many families who have also lost their child. For us personally, the support of these families who have walked the same path was invaluable. We were connected by an invisible bond, an understanding with someone who just ‘knows’ exactly how you are feeling. This real support is wonderful and has helped us all so much during our journey.
After Lewis’ death it became apparent to us that there was a large unmet need to provide support and information for bereaved families. We were conscious that not every family has the support network around them that we were lucky enough to have. Like many families who have been through a challenging journey, we felt strongly about giving something back. We wanted to try and help address these gaps in some way and also reduce the stigma and taboo attached to such a loss, and so, A Child Of Mine was born.
A Child Of Mine is now a registered charity supporting families across Staffordshire and the UK when a child dies. We provide practical information, guidance and signposting, together with emotional and financial support to families when they need it most. We have already started to make positive impacts in families’ lives by increasing wellbeing, improving emotional health and by providing access to much needed information during the difficult days that lie ahead.
To find out more please visit www.achildofmine.org.uk or follow us on our social media pages:
Twitter – twitter.com/achildofmine
Facebook – facebook.com/AChildofMine
Gayle, Lewis’ mum