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Sophie's
Story

 

By Charlotte Fairall
 

Sophie's Legacy was created in memorial of Sophie Fairall and the legacy of change she wanted to create.

 

Sophie had just turned 9 when she was diagnosed with a rare form of childhood cancer called Rhabdomyosarcoma in September 2020. During her treatment, she endured 9 rounds of intense chemotherapy and 7 weeks of radiotherapy.

 

Sophie never managed to get into remission and in June 2021, after only eight weeks on a programme of maintenance chemotherapy, she relapsed. With no treatment options left Sophie passed away aged 10, in September 2021, just 1 year after her diagnosis.

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Prior to her cancer diagnosis, Sophie was just like any other child. The second daughter of 3 to Charlotte and Gareth, Sophie was active,  healthy and always had a smile on her face. She was a popular child who loved being around her friends and family.

 

As the middle sister, Sophie was close to both her siblings. Lucy, 5 years older was her role model and Amelia, less than a year younger, was the perfect play pal. Her hobbies were dancing, baking, art, socialising, reading and animals.

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The first symptoms Sophie displayed were in early Summer 2020. She started complaining of on-off tummy pains and nausea. In August, when the symptoms became more severe, we made a number of telephone and virtual calls to our GP. After finally receiving a face-to-face appointment, the GP dismissed it as a bowel infection which would get better on its own.

A few days later Sophie did improve and was well enough to go on a planned holiday with her grandparents and two cousins for a week. On the second day of the holiday Sophie started bleeding but she was too embarrassed to say anything. It was only when she came home I noticed the blood when washing her clothes. By this point she had been bleeding for 8 days solid and it was getting heavier. I knew at this point something wasn't right. I phoned the GP surgery straight away on Friday 4th September 2020 but they dismissed it over the phone as her first period 

The next day I called 111 for an out of hours appointment and the phone operators similarly diagnosed it as her first period. They were only able to offer an appointment to see a GP who could prescribed medication to stop the bleeding. At the time, I questioned why they would give a 9 year old medication to stop bleeding when they didn't know the cause. They ended up saying if I was that concerned to take her up to A & E which is what we did.

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In A & E, a doctor felt her tummy and questioned 'How long has she had this lump for? Those words will forever haunt me and I replied 'What lump?'.  Numerous tests and questions ensued with the doctor informing us we would be transferred to Southampton Hospital in the morning.

Over the next few days Sophie underwent various scans and tests. The MRI was particularly traumatic and painful as the tumour was pressing into her. The senior surgeon wasn't sure from looking at the scans if the lump was cancerous or benign tumour however at 12cm it was a significantly large sized tumour that needed to be removed urgently. On 10th September 2020 Sophie underwent 6 hours of surgery with a large team of medics. 

The operation unfortunately proved much more complex than originally perceived. Having planned to remove the tumour whole, they found it was not possible to do so due to the fact it was connected to so many organs. After hours of work, the team managed to remove 95% of it.

 

Following the operation, the Senior Surgeon informed me the tumour was likely a rare form of cancer and in his opinion Rhabdomyosarcoma. Due to Covid restrictions at the time, I was told this news on my own which was extremely hard and scary. Gareth was asked to come to the hospital to be informed but was not allowed to stay. Sophie remained in hospital for a week recovering from the major surgery. She had further complications when her bowel descended on itself but was eventually allowed home after 7 days.

A week later Sophie commenced the 9 rounds of chemotherapy treatment. It was extremely aggressive and punishing on her physically. Sophie lost her hair and was also was very sick. She was remarkably brave and positive with her beaming smile remaining. After four rounds of chemo we went to UCLH hospital in London for 7 weeks of daily radiotherapy. Sophie received the highest amount of radiotherapy possible for a child. The side effects of the radiotherapy to her abdomen were brutal and it was one of the hardest times in her treatment course.  Sophie and I had to remain in London for the entire 7 weeks. With the on-going Covid restrictions it was an extremely difficult time for the family being separated, particularly at Christmas time.

To our relief, in April 2021 all that was remained of the tumour was a small dormant mass by her bladder. Sophie was then able to start on maintenance chemotherapy which involved me giving her a daily chemo drug and going into hospital once a week for another chemo drug.

Our relief was sadly short-lived. 8 weeks later during a routine MRI doctors discovered a brand new tumour next to the one that remained dormant. The new tumour was around 2.5cm in size and in the area that had the most amount of treatment. It was a devastating blow and we knew our options at this point were limited. Sophie couldn't have the normal relapse chemotherapy because of the toxicity issues with her bowel that the frontline treatment had caused. We were told that anything we give to Sophie was about giving her time not a cure. We attempted another chemo drug but this proved ineffective as the tumour continued to grow.  It was then we made the heart-breaking decision with doctors to stop treatment.

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We were honest with Sophie throughout her treatment and involving her in the decisions. We felt this was her body and the one that had to endure the treatment. Sophie had always been so positive and believed throughout the doctors would cure her. When she relapsed she decided didn't want any more treatment - she had had enough and couldn't face enduring more. She knew what this meant but wanted to live the time she had left at home with her family. A very brave and grown up response to something that is everyone's worst fear.

Sophie set out writing her bucket list and was able to achieve some incredible experiences. Most of these she did through pain and discomfort and often I did not think they would be possible - but through grit and determination she did. She also wanted to change a number of things nationally and wrote these on her bucket list for me to achieve in her memory.

Sophie stopped treatment in July 2021 and she sadly died aged 10 years on 18th September 2021 surrounded by her family at home. The last two weeks of Sophie's life the tumour blocked the bowel resulting in it never recovering, it meant she was bed bound and in horrendous pain. Sophie's personality remained right to the end and she never lost her incredible spirit.

Sophie wanted the following things changed and this will be her legacy in memory of a remarkable young girl who touched so many lives.

1. Play specialist 7 days a week in hospitals

2. Improvements to food for children in hospital

3. For parents to be fed when staying with their child

4. For GP's, nurses and health professionals to be trained in childhood cancer

5. To increase the funds (currently 3%) in childhood cancer research

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