Last week we were invited to experience, and capture on film, a day in the life of eight year old Ben Charlton. As a member of the digital team here at Leukaemia & Lymphoma Research, my opportunities for interaction with the people we help is usually limited to online but this time I was fortunate enough to go along.
A bit about Ben
Ben has acute lymphoblastic leukaemia and is currently undergoing maintenance treatment following two years of intensive chemotherapy. His current regime is complex but includes: daily chemotherapy - administered by his mum and dad, Lynn and Charlie; fortnightly intravenous chemotherapy; and 3-monthly lumbar punctures to inject one of his drugs, methatrexate, directly into his spinal fluid. I went along, with a camera crew, to document Ben's day on one of his hospital lumbar puncture visits.
Ben and his brother Zack are little livewires! They have more energy than they know what to do with and taekwondo, cricket, swimming and a multitude of other activities don't seem to take it out of them. Ben looks very healthy and mum Lynn attributes this in some part to him keeping active throughout treatment.
An early morning
We started the day with the family at 6.30am when Lynn was up preparing for breakfast then we woke Ben up at 6.45am so that he had enough time to eat breakfast before 7.30am as from then on he was nil by mouth.
Following breakfast we had a couple of hours before heading to the hospital, in which time, the family took the dog Mac out for a walk and then Ben and his dad practiced taekwondo spa-ing on the front lawn. Ben was completely unphased by the fact that he was having general anaesthetic that day. He calls it 'sleeping medicine', and taking it regularly has become ‘normal’ for him.
Getting into the car on the way to hospital Ben says to me in his thick Newcastle accent "prepare to be the most bored you've ever been". He warns me that there is a lot of waiting around at the ward and challenges me to a game of Halo on the Xbox when we get there.
The hospital visit
Arriving at the hospital, Lynn and Charlie catch up with the other parents - all with children at different stages of treatment for leukaemia. They are all regulars in the Children's Oncology Ward and it was clear from talking to many of them that the biggest support they have found has come from other parents at the hospital. Lynn said that "whenever you have a bad week and you come here, there is someone who has already been through it and can reassure and support you."
They day is long - there is a lot of waiting around but nobody complains. Ben couldn't eat anything until 3pm and despite being hungry, dealt with it better than most adults would. Zack was fond of our cameraman Charles and followed him around most of the day. Ben had a series of finger-pricks, blood taken and chemotherapy intravenously throughout the morning before going into theatre. Coming out of the theatre after the 20 minute procedure Ben was a little groggy and hungry but after some food and an hour's rest he was back to his usual spritely self.
The car drive back to Ben's house gave the camera crew and I a moment to take in what we had just experienced. Sitting in the hospital for six hours is boring; speaking to people in such a difficult situation is challenging; being on a children's oncology ward is emotionally exhausting - yet Lynn, Charlie, Zac and Ben go through this on a regular basis and take everything in their stride showing amazing courage and strength.
The entire day was an absolute privilege. The Charlton Family are such great company to be around because of their honest, open and positive nature. The inspirational optimism and carry-on attitude that Ben has is certainly thanks to his parents who have brought up an amazing boy. Despite going through intensive treatment, hundreds of hospital visits, months off school, being on steroids, pain, losing his hair and having to grow up too fast Ben remains a contagiously happy boy.
The biggest thing to come out of the day was the realisation that there is one thing these parents want and that's a cure. Charlie explained that "rationally, 90% is a good survival rate but it isn't good enough. For a parent, only 100% is good enough".
I am more motivated to help beat blood cancer than ever before. Please help us beat childhood leukaemia and all other blood cancers by donating to our life-saving research, supporting us online, giving us your time as a volunteer or spreading the word about the work that we do.