I am not superstitious

I wouldn’t call myself superstitious. I will happily walk under a ladder, jump on the cracks of the pavement, and definitely don’t feel the need to salute a magpie that flies across my path. However, I have always had this gut wrenching feeling that I can’t be the first person to hold my baby when they are born, in fear something terrible would happen. Ted was born on August 17th 2007, and due to circumstances, I was giving birth to him on my own. The midwife who delivered Ted was also in the room on her own, so despite it being in bold letters “Do not hand the baby to mum first”, she informed me she would have to give me the baby, or she would have to put him on the floor, and she wasn’t allowed to put him on the floor. She handed him to me, and the first words I said were; “Please don’t let him die.”

He was healthy, there were no complications, and he was also my third child, so it wasn’t like I hadn’t done this before. Little did I know in five short months my daily mantra with Ted would be “Please don’t let him die.” He was a baby who was in a hurry to do everything. He was sitting very early, crawling at four and a half months and pulling himself up on furniture at five months. In the January, when he was five months old, Ted got an ear infection. Again, he wasn’t my first so knew it would pass, but something changed. He was given antibiotics, about five courses in all, and the ear infection eventually cleared, but things weren’t right. My happy determined baby, was no longer happy. He cried and screamed for about 18 hours out of 24 every single day.

90% of Ted’s blood cells were cancer cells

We went to Tesco afterwards and I remember having Ted in the shopping trolley. People would smile at him, and anyone who looked our way I would tell them “His name is Ted and he is a lovely baby”. I knew he was dying and I needed people to know he existed. I didn’t want him to not have made an impression in life. It seemed so pointless and cruel. We didn’t have to wait a week for the results, within two hours the phone rang and our lives have never been the same since.

90% of Ted’s blood cells were cancer cells. He had infantile acute lymphoblastic leukaemia, which is only found in children under 12 months old. The five year survival rate for this is 20-50%. Ted was considered lucky as he was given 50% chance, when he had an initial good prednisolone response. He had a minimal residual test, which was a new thing back then, and treatment began. He was put on a strict treatment protocol, and had four blocks of intensive treatment, followed by 18 months daily maintenance chemotherapy. Unfortunately, the chemotherapy instantly attacked his stomach and bowel, which meant he wasn’t able to eat, and nappies were put through their paces with the bowel damage. Ted was always neutropenic, and always had an infection. We would be in isolation all the time which meant we watched life happen outside his window. It became incredibly isolating for Ted and us. You are entered in to a world where choices are unbearable.

Beads of Courage

When Ted finished his treatment, he was handed a little plastic medal with “Winner” on one side and “Made in China” on the other. I was so despondent in that brief moment, as it no way represented the true journey a child takes with cancer. These medals are 4 for £1 in any good supermarket! We had already set up a registered charity to promote the signs and symptoms of childhood cancer, as we weren’t the only family who struggled to get a diagnosis. We developed the UK’s first signs and symptoms awareness card, as at the time there was nothing available. We decided through this we would bring the Beads of Courage programme to the UK to support the mental health and wellbeing of children, siblings and family through the amazing arts in medicine therapy programme Beads of Courage. We work in partnership with Beads of Courage.inc in America, but we are registered charity Beads of Courage UK.

A full circle

I never would have imagined years ago when staying at Great Ormond Street Hospital, all those times I would go outside to breathe in a little hustle bustle and look across to the what was then Children with Leukaemia offices, that one day a charity I helped to co-found would be working in partnership with them to improve the lives of so many children.

You can read more about our partnership with Beads of Courage UK