In June 2008 we were told the devastating news that our beautiful 8 month old son had Cancer. He was diagnosed with Stage 4 high risk Neuroblastoma, (MYCN Amplification). Neuroblastoma is an extremely aggressive childhood cancer and for Lewis it carried a very poor prognosis.
Our world had fallen around our feet and we were numb. But, we dusted ourselves off and began our very long and emotional journey. Lewis went through the treatment protocol like a star, always smiling and charming every nurse he had the pleasure to meet. Birmingham Children's Hospital became like a home to us spending many nights on camp beds and living off microwave meals. In January 2009 Lewis had finished all of his major treatment and just remained to complete a course of oral drugs that could be given at home, life was about to become normal again.
However, in June 2009 Lewis showed worrying signs that he may have relapsed, and sadly this was confirmed almost a year to the day of his initial diagnosis. Unfortunately there is no relapse protocol for Neuroblastoma and so we began another long, bumpy road of faith. After almost 12 more months of further intensive treatment Lewis's little body could not fight anymore and on 3rd July 2010 Lewis gained his Angel wings, a date that will remain embedded in our souls forever.
We love to talk about him, it helps with our healing and of course keeps his memory alive. Throughout his journey we always remained positive, never once believing that he would not survive, we had faith in our little boy. We were very lucky that we had an amazing team looking after Lewis at the hospital, they knew us well and we trusted them but, they also supported our way of thinking, that we had to stay focused and positive because that was our coping mechanism.
Since Lewis's death, we have found ourselves on a different path, albeit just as emotional. We are still following our positive approach to life and to be honest have dealt with his death much better than we thought we would. We do believe that because of our up front and open way of dealing with losing our little boy it has helped us to rebuild our lives and even to look forward to life again. We can smile again and you know, that is OK!
After Lewis" death we became very aware of gaps that existed in services for bereaved families. It felt like we were at the top of a waterfall, we knew we were about to be swept away, but we didn't know where we were going or, where we would end up. It was very scary and we were on our own, with no one to tell us that our feelings were normal. For us, however, we felt lucky (if that is the right word) to have a wonderful support of other families we had met through the hospital where Lewis was treated.
Our "Oncology family" as we called them have been a great support to us as so many of them have been in the position we found ourselves in now. We can talk to them and they fully understand how we are feeling, they don't have to pretend or imagine, because they know! This real support is wonderful, an invisible bond, a connection with people who have suffered the same loss. Just to be able to talk, cry, laugh or, just say nothing to someone who has been there, who knows what is going through your mind, who has walked in your shoes.
We wanted to share the wealth of information and knowledge that we have built up from our own experience and from others who have walked the same path, but also from some of the trusted professionals that have also helped us along the way. Experiences and ideas that may help, comfort and we hope make life a little bit more bearable over the coming months. Some of the ideas you may see will not be for you, but that is OK as they are only there to inspire; there is no right or wrong, you must think about with what feels right for you.
We truly believe that it helps to talk, and be honest with your feelings. We have a 9 year old daughter and also now, a 1 year old son, who to be quite honest have kept us focused and we are extremely lucky to have them. We never kept anything from our daughter during our journey with Lewis, we were very open and honest and kept her involved every step of the way, and I have to say we have no regrets about doing so. But it is important to know how to help any other children you may have, how to talk to them and explain. We know that in your own grief this will be hard, but we have included a few articles and some guidance which may help.
Please take some time to browse through our pages, and should there be something specific you need to understand or can't find on here please, contact us and we will do our upmost to help.
"A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. But....there is no word for a parent who loses a child, that's how awful the loss is!" - Neugeboren 1976