Sophie experienced tummy pain and nausea for a few months, which the GP thought could be as a result of food intolerances, bowel infection and heart burn. When Sophie started bleeding, it was clear something wasn’t right. However, the GP put it down to her first period even though Sophie had just turned nine.
On the 5th September 2020, we took her to A & E where a 12cm lump was discovered in her abdomen. They asked ‘how long has she had this lump for?’. Sophie underwent MRI, CT and ultrasound scans but they still weren’t clear if it was benign or cancerous. On the 10th September 2020, Sophie underwent a 7 hour surgery to remove the tumour. The surgeon managed to remove 95% and at this point said it was likely to be rhabdomyosarcoma. Due to covid I was told this on my own.
She started the first of 9 intensive and aggressive rounds of chemotherapy on 25th September at Southampton hospital as an inpatient. The chemo made Sophie feel extremely sick and she really hated it. Sophie would count down the time to come out of hospital and get home. On 21st December 2020, Sophie went to UCLH hospital in London for 7 weeks of radiotherapy. This was a particularly difficult time due to covid, and the lockdown, which meant we spent the whole time away from my husband, Gareth and Sophie’s two sisters. Sophie went through radiotherapy everyday until 2nd February 2021. She struggled with the side effects of nausea, sickness, pain and tiredness throughout this time. It was gruelling, with Sophie receiving the most amount of radiotherapy possible for a child. Sophie didn’t eat for over 5 weeks during her time in London due to how sick she felt. It was hoped the very high dose of radiotherapy to the bladder area would kill any cancer cells left behind. Sophie suffered with severe side effects from the treatment which resulted in issues with her bowels. It would often mean she would be hospitalised to manage the symptoms.
Sophie responded well to the treatment and all but 1cm of tumour was left. She started on maintenance treatment at the end of April 2021. Sadly, during a routine MRI in June 2021 it showed a new tumour had grown and it was currently 2.5cm. The new tumour was by her bladder – a similar place to the first tumour. Given Sophie had extensive treatment to her abdomen and her issues with her bowels, it meant that the treatment options were limited. We were told anything offered would be to give us more time rather than a cure. Sophie started on one chemo drug but after the first round it showed the tumour was still growing at the same rate. In July 2021, we all made the decision to stop any further treatment to give Sophie the best quality time she had left fulfilling her bucket list. Sadly the tumour was growing quickly and at the end of August it blocked her bowel resulting in it never recovering and, ultimately, Sophie’s death. Sophie died on 18th September 2021, aged 10, surrounded by her family at home. Sophie was very close to her two sisters – Lucy aged 15 and Amelia aged 9 at the time she died.