Olivia, aged 4, was diagnosed with forearm alveolar RMS in January 2020. Her care was led by Leeds LGI.
Mainline chemotherapy started 24/01/2020 followed by surgery and radiotherapy which was completed 16/06/2020. 12 months of maintenance followed. Olivia sadly relapsed 2 months after maintenance ended, in her supraclavicular notch. VIT chemotherapy commenced 21/10/2021 and only completed 4 cycles due to chemotherapy not being effective. Surgery then went ahead followed by radiotherapy and maintenance reintroduced on 21/03/2022. She sadly relapsed again in September 2023 following a routine chest X-ray which identified spots in her left lung. Olivia also had lynch syndrome gene which gave hope for an immunotherapy treatment (Nivolumab) but unfortunately this was unsuccessful, and she began end of life care in December 2023 and heartbreakingly passed away peacefully at home on 7thJanuary 2024, aged 8.
Olivia, aged 4, had no obvious signs of illness but we noticed a swelling on her forearm which was only visible looking from the side, this was on the 30th December 2019. After a visit to the pharmacy, we were told it looked like a horse fly bite and to try piriton for the weekend. This had no effect so we went to see the GP first thing on the Monday morning, who didn’t know what it was and referred us straight up to the children’s ward at Scarborough hospital. After a number of tests and scans, we were told that evening that they thought it was something sinister, they told us to return the next day for an MRI, which confirmed that the lump was malignant.
We were referred to Leeds LGI and Olivia had had her biopsy on 06/01/2020 and her port fitted on 12/01/2020. Chemotherapy started on 24/01/2020 as per RMS protocol IVADo. After 3 cycles, she underwent surgery to remove the remaining tumour and radiotherapy started on 06/05/2020, she then started the maintenance chemotherapy for 12 months, completing 16/07/2021.
In September 2021, we found a small lump on her neck (supraclavicular notch) a biopsy on 01/10/2021 and VIT Chemo commenced 21/10/2021. Olivia completed 4 cycles and had further surgery 17/02/2022 and radiotherapy. Her second maintenance chemo started in March 22 and ended September 2023 due to relapse following a routine chest Xray where lesions were detected on her lungs and confirmed as relapse by a CT scan.
Nivolumab immunotherapy began 30/10/2023, this was only an option due to Olivia having lynch syndrome but unfortunately this was not successful. After 3 cycles, Olivia became very breathless and a CT scan confirmed Olivia’s tumours had almost doubled. She began palliative care on 6th December 2023 and sadly passed away at home on 7th January 2024 aged 8.
Throughout the whole of the 4 years while Olivia battled this awful disease, she did not once complain, even after huge surgical procedures she was whizzing around the ICU within hours, her outgoing attitude and zest for life never wavered. She lost her hair twice, the first time being only 4 this did not phase her in anyway but the second time around when she was 6 this caused her the most anxiety but she still never stopped her living her life to the fullest.
She managed frontline and maintenance chemotherapy with very few issues, while on maintenance we had a taste of ‘normality’ and she managed to fulfil her dream of riding again and owning her own pony, Solo. She took part in shows and in summer 2023 began jumping and managed to complete a few showjumping competitions.
In January 2023, Olivia told her mummy and daddy that she was going to ask Father Christmas for a baby sister, something she had longed for as she was the only child. In April, Olivia’s wish came true when we found out we were expecting a baby, her baby sister Elsie Enid was due on Boxing Day 2023.
On 6th December 2023, we received the devasting news that there was nothing else they could do for Olivia, and she was on end-of-life care. We were desperate for Olivia to have a chance of being the big sister that she had longed to be, Mummy was induced on 10th December and Olivia was allowed to be at the water birth and was fully involved in the whole birthing process. She did all the firsts with baby Elsie, skin on skin, first bottle, first check, this was all possible due to the amazing maternity team at Scarborough hospital. Olivia managed just 4 short weeks of being the best big sister to baby Elsie, helping choosing outfits and nappies and bathing her every night.
Olivia passed away peacefully and will forever be baby Elsie’s guardian angel.
We would like the percentage of survival rate to be increased dramatically through more awareness and new research to improve treatments to ensure better outcomes, so no more children have to suffer.
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