Posted on Wednesday 11 March 2020
Edith and Lewis’s story – “Cancer showed us how strong people can be and it just made us love each other even more.”
Edith was just four-years-old when she was diagnosed with cancer. Now seven, Edith and her family are counting down the days to the end of her treatment – and to her dad Lewis taking on the Virgin Money London Marathon for CLIC Sargent. Here Lewis shares their story and the inspiration his daughter and the care CLIC Sargent has given him to take on his marathon challenge.
It was November 2017 that we first noticed something wasn’t right. Edith was consistently coming down with tiredness and fatigue, looking pale, and wasn’t herself. We went to the doctors to check, and they said it was likely to be a bug. Edith got better, but then two weeks later, it happened again and she got ill.
As time went on, Edith got better again, and then around Christmas she got really unwell. We were in hospital for four days undergoing tests and met every department in the hospital – each one coming back with a blank. Nothing obvious was causing it.
Then in February 2018, Edith’s right cheek really swelled up and looked odd. We went straight back to A+E and again – they took blood tests and that’s when it showed abnormal blood counts.
By February, it had been three or four months of not knowing what was causing Edith to be unwell. Both Kat, Edith’s mum, and I had a sixth sense that it wasn’t going to end well, you just have this feeling. To hear the diagnosis of leukaemia when it finally came was a relief in a sense. The doctors explained it compassionately to us and we felt at least we had an answer and a plan. It is better to know what course you are on rather than wandering aimlessly.
Edith had 26 months of treatment in duration, and different stages. The intense stage at the start was brutal for her and we were in hospital the whole time. They were very strong chemotherapy drugs that caused hair loss, and very powerful steroids that caused weight gain and a rollercoaster of mood swings and insatiable hunger.
To see your daughter double in weight and change in appearance is a shock and difficult to watch – but you just have to trust she will return to the Edith you know.
Even now, this is the easier part of treatment she is on and maintenance, but she is still taking daily chemo at home and has medication each week, eight tablets on a Thursday, weekend tablets two times a day, weekly blood tests with the community nurse and hospital visits – and that’s the lighter mode of medication.
Cancer has shown me with the support that is out there, it doesn’t have to be as scary and challenging as you may think."
CLIC Sargent support
The initial shock, anguish and pain were really difficult as a family to deal with. The support we had on the ward through Nicky, our CLIC Sargent social worker, was life changing. It enabled us to talk to someone who knew what we were going through, and put our mind at ease to talk things through with her.
She told us the rights and wrongs and at a time when you are whacked round the head with a diagnosis and the practicality of how your life is going to change dawns on you as well – how will we pay our mortgage?, will Kat have to give up work?, on top of the emotions of a diagnosis, can be so overwhelming. The support and advice we got at that time, access to benefits, how to approach work and talk to them – it was a massive weight off our shoulders and something we are so thankful for to have had Nicky’s support.
Without CLIC Sargent we would have felt more isolated and under pressure to deal with the everyday life outside the cancer diagnosis. We would have emotionally and financially been left without anyone to lean on and at a time when we had all our strengths going to help our daughter that would have taken some of our strengths away.
My work were incredibly supportive and gave me the time off I needed. Kathryn was a full time teacher at the time and through advice from CLIC Sargent was signed off work by a doctor for a year. We weren’t aware that was an option but it was a game changer for our family life during Edith’s treatment for cancer. Edith has three sets of grandparents and they all rallied around us and offered so much support. We feel blessed to have had people there for us.
Cancer has completely changed our perspective on life. It came into it unexpectedly and it felt like it robbed us of a couple of years. Its long term consequences are still unknown but it also showed us how strong people can be and it just made us love each other even more. It’s shown me with the support that is out there, it doesn’t have to be as scary and challenging as you may think.
Edith is a force to be reckoned with. She is very enthusiastic and knows her own mind. Everyone on the ward always jest to get ready for a whirlwind when Edith arrived. Her energy has helped us undoubtedly. She has tackled everything head on and is a courageous little fighter. How can you complain when she is just getting on with it? We draw our strength from her.
I like having fundraising challenges and the London Marathon was always a challenge I wanted to do, but I wanted to use this as a reason to get out there to raise money for the charities we want to give back to. CLIC Sargent was the obvious choice for us and a way of paying back for the help we have received. Having spoken to other families who have become our friends, you meet so many amazing people, and so many of those were people staying at the CLIC Sargent Home from Home, and so it was the obvious choice to run for them.
I’m very, very anxious as to where the extra miles are going to come from for the London Marathon past the half marathon stage. At the start of training I struggled to run 5k, and now I have just done a half marathon. The thought of turning around and doing an extra 13 miles after that is daunting! But I will get there, I don’t know how, but I will get to that finish line. It is the perfect way to mark the end of Edith’s treatment in 2020, which finishes the week after the London Marathon. It will hopefully be a good week.
To sponsor Lewis’s marathon challenge and support, visit: https://www.justgiving.com/fundraising/teamedithrunning