Mollie, now aged 6, was diagnosed with embryonal rhabdomyosarcoma, in August 2018. Her cancer is currently stable following the completion of her treatment in January 2020. Mollie’s treatment was led from the Royal Victoria Hospital for Sick Children, Belfast.
Mollie was diagnosed, at 2 years old, with embryonal rhabdomyosarcoma in August 2018. The tumour was located between her eye and sinus causing her to lose the sight in her left eye. The only visual symptoms she had was a slightly droopy eyelid which developed over a period of 24-36 hours. Other than that she was very well and a typical 2 year old! The GP initially thought she may have an allergy however the next day I was not happy with her eye and took her to A&E. The nurse who triaged her recognised the warning signs having had an eye cancer as a young child. A CT scan later and a 2cm x 3cm mass was found deep inside Mollie’s face. After a series of invasive tests we received the diagnosis of a cancer I couldn’t even pronounce. Mollie started intense chemotherapy which involved a hospital admission every 3 weeks for 3 days. In October 2018, we travelled to Jacksonville, Florida so Mollie could receive Proton Radiation. Radiation is an important part of treating rhabdomyosarcoma and despite knowing the awful long term side effects this treatment was needed to try and save Mollie’s life. Despite the awful reasons we were in Florida we had a truly wonderful time as a family. Mollie and her big sister Grace still talk about their ‘holiday!’ On return from Florida, Mollie finished intense chemo and then completed 12 months of maintenance chemotherapy. Treatment finished in January 2020 and Mollie now has regular MRI scans to monitor the residual tumour. Alice’s Arc was one of the first rhabdomyosarcoma pages I found and Sara has been supporting me from the very early days!
Awful. Watching your child go through gruelling cancer treatment knowing they might not survive is simply horrific. I don’t think I will ever get over the trauma of the last three years. Mollie was strong and just got on with it like it was just normal. She was so young, she didn’t know any better. I find following completion of treatment very difficult. Most people assume Mollie has ‘beaten cancer’ (a term I HATE. This is not a competition, race or battle) and we can put this ‘all behind us.’ What people don’t realise is rhabdomyosarcoma is sneaky and unpredictable. It can come back whenever it likes and sadly I’ve seen this happen far too many times. I live life not knowing what the next day will bring, not knowing if Mollie will see her next birthday or christmas but at the same time I am so grateful she is here and doing well because so many children are not.
I’ve become a little obsessed about childhood cancer over the last two years and what is clear is treatment options for children with rhabdomyosarcoma is limited and dated but more importantly for some types of rhabdomyosarcoma does not have satisfactory outcomes. These little children have an incredibly tough time and many do not survive. This is not good enough. We owe it to them to fight for kinder more successful treatment options. Awareness also needs to increase. Doctors need to be made aware of sarcomas in general and always think ‘could it be a sarcoma.’ The work of Alice’s Arc is incredible and a charity I will be a life long supporter of. In memory of Alice and all those other little children who have lost their lives. WE CAN make a difference.
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A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
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