Freddie, aged 4, was diagnosed with embryonal rhabdomyosarcoma in his left middle ear with parameningeal involvement, in July 2017. Sadly, Freddie passed away in October 2018, aged 5. His tumour returned aggressively to his brain, a new location. No treatments were available to stop it’s growth.
Freddie was diagnosed with Rhabdomyosarcoma in late July 2017. He had started to feel unwell a few weeks earlier with an ear ache. After a few days a lump appeared in his neck. We went backwards and forwards to the GP and ENT specialist.
We were extra wary as in March 2017 Freddie’s younger brother had been diagnosed with a brain tumour and was receiving chemotherapy after a successful tumour removal. We knew the strange signs of cancer, we had trodden this path before, we had that awful feeling again. It just couldn’t be.
Freddie was suspected of having a severe infection in his neck. He started strong antibiotics. Then, trapping his finger in the art cupboard he turned around crying only half his face was not crying. He had facial palsy caused by what we now know was the tumour. Still we were sent away from A and E…… “no mum it’s not what you think it is”…. I will never forget those words.
A few days later Freddie was taken to GoSH where he started chemotherapy. A few weeks later we were splitting ourselves between boys at the were treated in separate countries! Freddie underwent proton treatment in Florida while Arthur continued his treatment in the U.K.
After months of madness the boys finished their treatment in the same day with an hour of one another. We started to recover….
However just weeks later Freddie started to have seizures. The tumour has returned, this time in his brain. He was given weeks. He fought every step of the way and died a few months later in our bed at home. Arthur remains in remission but desperately misses his brother. They had a deep bond as brothers and this reached even greater depths as they battled cancer together.
Freddie’s parents are active supporters of Alice’s Arc and have been fundraising for the last few years. Freddie’s mother, Natalie became a trustee for Alice’s Arc in 2020.
Freddie remained joyful throughout his cancer treatment. Always full of bounce, laughter and love. He had his brother to go through the journey with. They had their dressings changed, they talked about their wigglies, they took medicine together. They looked after each other through it all. Freddie was brave, determined and magical. You were lucky if you met him.
We would like to see quicker diagnosis and more awareness for parents. We would like to see kinder treatments. We would like more care given at home. We would like to see support for siblings of children with cancer and their friends.
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