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Sophies Journey

Sophie had just turned 9 when she was diagnosed with cancer.

Sophie was just like any other child, she was active, happy, healthy and always had a smile on her face. Sophie was a popular child who loved being around her friends and adults. Her hobbies were dancing, baking, art, socialising, reading and animals. Sophie is the middle of three daughters of Gareth and Charlotte Fairall - Lucy is 5 years older than Sophie and Amelia is 51 weeks younger than Sophie! Sophie was so close to both of her sisters and loved spending time with them.

Sophie started complaining of tummy pain and feeling sick but it was occasionally to start with and we brushed it off as eating too much, needing the toilet etc. From July 2020 onwards the pain and feeling sick started to become more regular but Sophie never made a big deal of it. Most of August the pain become more obvious and we made a number of telephone calls to our GP. We had one face to face appointment in the middle of August after Sophie had spent a number of days in bed unable to eat or move. The GP felt her tummy and checked her over but felt it was likely to be a bowel infection and it would get better on its own.

A few days later Sophie started to feel better and was well enough to go on a planned holiday with her nanny and Grandad and two cousins for a week. On the second day of the holiday Sophie started bleeding but she was too embarrassed to say anything. When she came home I noticed when washing her clothes that she had been bleeding and asked her about this. She said she didn't know what was happening but said she was still bleeding. By this point she had been bleeding for 8 days 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 as her first period even though I was insisting it wasn't.

On the Saturday morning it was niggling me that something wasn't right and I didn't feel I could leave it. I called 111 and three hours later they called back saying it was likely to be her first period. I stated this wasn't her period and if it was then why is she still bleeding 9 days later with it getting heavier each day. They offered to see the out of hours GP who could prescribe some medication to stop Sophie bleeding - again I questioned why they would give a 9 year old medication to stop bleeding when they don't know the cause. They ended up saying if I was that concerned to take her up to A and E which is what I did.

Looking at her walk into the hospital I thought to myself that on the surface she looks really well but I can only call it mother’s instincts knowing something wasn't right. The doctors felt her tummy and said 'how long has she had this lump for? Those words will haunt me as I replied 'what lump', Lots of tests, questions and then the doctor saying her tumour markers were slightly raised and we would be transferred to Southampton Hospital the next day.

The next few days Sophie had scans, tests and a MRI which was horrific for her as she was in so much pain trying to remain still but the tumour was pressing into her. Sophie's surgeon wasn't sure from looking at the scans if it was a cancerous or benign tumour as it didn't look like either. What he saw was a 12cm tumour that needed to be removed. Sophie had the surgery on 10th September 2020 and a number of surgeons worked on trying to get the tumour out. It was such a difficult 6 plus hours and because of Covid I couldn't leave the hospital or have anyone in with me.

When the surgeon found the tumour he discovered something different to what they thought - it was definitely cancerous but stuck to so many organs. They spent hours trying to remove it but they couldn't remove the whole tumour. They managed to get around 95% of it which was amazing. The surgeon took me to a side room to inform me that it was more than likely cancer and he thought Rhabdomyosarcoma which it ended up being. I was told this on my own which was so hard. They managed to get Gareth up to the hospital later to inform him but he was only able to stay for a short while before going back home. Sophie remained in hospital for a week recovering from the major surgery and her bowel descended on itself and caused a number of problems but after 7 days she came home.

A week later Sophie started the 9 rounds of chemotherapy which was very aggressive and brutal. Sophie lost her hair which she was devastated about and also was very sick from the chemo. She was so brave, positive and she smile remained showing people that cancer wasn't going to change her outlook on life. After four rounds of chemo we went to UCLH hospital in London for 7 weeks of daily radiotherapy. Sophie received the most amount of radiotherapy possible for a child. The side effects of giving radiotherapy to the whole abdomen was brutal and it was some of the hardest times of the treatment. We had to remain in London for the whole 7 weeks and it was during the second lockdown which meant everything was shut and the support of friends and family was virtual.

At the end of 9 rounds of chemotherapy and 7 weeks of radiotherapy all that was left was a small amount of tumour by her bladder which was dormant. Sophie started on maintenance chemotherapy which involved me giving her a daily chemo drug and going into hospital once a week for another chemo drug.

After 8 weeks during a routine MRI doctors discovered a brand new tumour right 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 huge blow and we knew our options at this point were so low. 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 tried one different chemo but the tumour continued to grow so we made the heart-breaking decision with doctors to stop treatment.

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 was so positive and believing throughout the frontline treatment that doctors would make her better. When she relapsed she didn't want any more treatment, she was fed up being in hospital and couldn't face the treatment. 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 she achieved some incredible experiences. She did most of these things through pain and discomfort, some days I didn't think we would achieve them but with Sophie's true 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 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 GPs, nurses and health professionals to be trained in childhood cancer

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