Posted on Friday 11 June 2021

Sophie’s story: “I don’t know what we would have done without that, it is just so invaluable for parents”

Summer time last year, Sophie was enjoying a week away with her grandparents after not being able to see them for months in lockdown. She’d been having tummy aches a few weeks before but the doctors said it was probably nothing to worry about.

Miles away from home, Sophie started to bleed. She had never had a period before and didn’t want to talk to her grandparents about it so kept it quiet.

“It was only when she got back that I noticed from the washing. I said to her ‘what’s been happening?’ and she said ‘I’m bleeding but I don’t know why’.”

Sophie was diagnosed with rhabdomyosarcoma - it was rare and aggressive

After over a week of heavy bleeding, Sophie’s Mum took her to A&E. The nurse took one look at her on the table and was shocked.

“Immediately the nurse said ‘how long has she had this lump for?’ and I said ‘what lump?’ She had this huge mass… a huge 12cm tumour in her abdomen”

Sophie had been so embarrassed about her bleeding that she was getting washed and dressed by herself. Her parents hadn’t seen just how much her stomach had swollen. Things moved quickly after that.

Sophie and her Mum were rushed to Southampton hospital where Sophie was moved from room to room, to have test after test. Soon, Sophie was going down to theatre for surgery to find out just what the tumour was.

After seven hours, 95% of the tumour had been removed. All this time, doctors couldn’t confirm whether it was benign or not.

“I then got pulled into a room to say ‘it’s cancer’, and this is quite a rare type of cancer which is really aggressive and that was the start of the journey we’ve been on ever since.”

Sophie was diagnosed with rhabdomyosarcoma. It was rare, it was aggressive and she would need months of treatment. After recovering from her seven hour surgery, Sophie was put onto chemotherapy. Sophie and her Mum would stay at Southampton just the two of them for weeks.

Due to the pandemic, Sophie was only allowed one person with her in hospital. She went weeks away from her Dad and two sisters. And Sophie’s Mum, Charlotte, went weeks away from her other two girls and her husband.

“My youngest felt quite jealous at times and said ‘I want to be ill so I get presents and time’. Whereas my older daughter who’s 14, it has hit really hard for her. She has found it really hard me being away. She was stuck at home, there was no school and I wasn’t here”

Once Sophie finished chemotherapy, she and her Mum then had to travel to London for seven weeks of radiotherapy. The family had booked a hotel, planned lots of family days out and places to visit to make the time as bearable as possible and to make sure they were all together. Coronavirus stopped all their plans.

“We were up there solid for seven weeks. We didn’t come home. That was when we went back into Lockdown so it cancelled our hotels that we had planned for my husband and the girls to come up. Everything shut down.”

Those seven weeks were the toughest part for Charlotte and Sophie. Not only could they not go out on day trips and explore the capital, they were away from their family for seven long weeks.

The pair were able to stay in Paul’s House, a Young Lives vs Cancer Home from Home close by to the hospital.

Sophie and her Mum spent the first few days in London in alternative accommodation with just a bed, en-suite and mini fridge. Charlotte says the move to Paul’s House was invaluable as they had space, and facilities that made everything that little bit easier.

“Sophie wasn’t able to eat or even cope with the smell of food so the fact that I could go downstairs and cook and have the food down there and she wasn’t able to smell it made such a difference, it meant that I could actually eat something.”

Despite being the toughest part of their journey, Charlotte says that being able to stay at Paul’s House made everything easier for them.

“I don’t know what we would have done without that, it is just so invaluable for parents. Until you’re in that situation I don’t think any parent has a clue how much of a difference that makes, but it’s huge.”

Sophie no longer has to go to hospital for treatment, she is home and doing well. But cancer has left a lasting impact on her young life. Life will not just go back to ‘normal’ for Sophie, her treatment has left her with life-long effects and there is a risk of it coming back.

“I think we’re realistic in knowing this isn’t the end of our journey, it would be pretty lucky if it was. We know the type of cancer we’ve got, we’ll be looking over our shoulder for a long time.”

For now, Sophie is on maintenance treatment and back home with her sisters, Mum and Dad. She has started meeting friends at the park, going back to school and getting up to mischief once more. Just like a nine-year-old should.

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