Sophie was just 16 when she was diagnosed with an autoimmune disease - primary sclerosing cholangitis. But despite being told age was on her side, within 18 months she had undergone a liver transplant and received the unthinkable news that she had post-transplant lymphoproliferative disorder – a type of non-Hodgkin’s lymphoma caused by the procedure. It is so rare it is only seen in 0.03% of cases.
Her mum, Julie, said:
“I was in complete shock. I was in despair, because my mum had died of cancer on the day of Sophie’s transplant, and I thought the new liver was the end of a difficult few months. But I just thought ‘why her? Why Sophie? How can all of this happen to an 18-year-old?’. It is every parent’s worst nightmare.”
Costs racking up
Sophie was moved from the family home in Poole, Dorset, to UCLH where she faced six months of chemotherapy to treat the cancer. Julie, a dental receptionist, had to quit her job to be with Sophie in London, and faced enormous living costs from the moment of diagnosis.
“The costs started racking up immediately” added Julie. “I had no income, and I had already got into financial difficulty with the three weeks off during her transplant. I was staying in accommodation in Belsize Park. They did us a good deal, but it was still £350 a week. You are eating food you normally wouldn’t eat because you always have to eat on the go, then you have your Tube costs getting around London. On top of all of this, I have got my mortgage to pay back in Poole plus the bills, electricity, heating. It was really stacking up. My outgoings at home are £900 a month. Those first weeks in London I think I was spending at least £1600 a month on top of that.”
“The financial worry is one thing you don’t need when you are already trying so hard to stay strong for your child. People have said to me that they don’t know how I have coped. But when your child is that ill you just get an inner strength. I knew I had to be positive for her. I had my break down moments in private.”
Taking some of the strain
But through Morrisons fundraising, CLIC Sargent were able to provide Julie with £420 grants to help alleviate some of the financial strain. Her CLIC Sargent social worker, Laura, was on hand to advise about other financial support available, and was able to find Julie a room in Paul’s House – a CLIC Sargent Home from Home just minutes from the ward.
Julie added: “What CLIC Sargent do is quite unique. Laura is incredible. She took on everything, trying to source funds, help for me because she knew how desperate our situation was financially. She was someone to turn to when I was not sure about something. I was able to turn to her for anything.
A Home from Home
“Paul’s House was just phenomenal. It really was. The staff there – Eric and Kat – they are just amazing. It really is a home from Home. I felt safe there, I was comfortable. It was quiet and it was amazing. I couldn’t believe I had got somewhere to stay. To have time out for me which I needed.
"There’s a room to relax, there is a shared kitchen so I could cook meals. Laundry was a godsend. I had been taking all Sophie’s clothes on the tube to Belsize Park where I would take it to a launderette and bring back clean.”
Morrisons is enabling more families to access the facilities at its 10 Home from Homes across the UK. The partnership is helping CLIC Sargent expand the service, so even guests not needing overnight accommodation can benefit from the facilities – like washing clothes, cooking a meal or using reliable Wi-Fi.
Getting on with life
Sophie left hospital on April 12 2018. But despite being told she is in remission, she and Julie remain worried for the future.
Julie added: “There is always a risk of relapse. Every time we go to the hospital, every time she gets stomach ache – we are living with it all the time and it will never go away. My mum got over cancer and it came back. That’s always in my mind. Sophie just has to get on with her life the best she can. They call it ‘cancer free’ but it is still there. CLIC Sargent offer the support that is needed, whether it is financial or emotional, it means the world. I can’t express how incredible that support has been from Laura and from CLIC Sargent.”
Help Morrisons fundraise £10m for CLIC Sargent by 2020.