a little boy wearing a hat

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Our Story

Alice’s Arc was inspired by the ongoing journey of a little girl named Alice, diagnosed with stage 4 alveolar rhabdomyosarcoma, at the age of 3, in March 2015. She had 20 months of chemotherapy and proton radiation in the US.  Alice spent one year in remission before her cancer returned in February 2018. She underwent 6 months of relapse chemotherapy and a specialist surgical procedure with brachytherapy, known as AMORE, in Amsterdam. She is currently cancer free.

She was given a 50/50 chance of survival over 5 years. However, relapse made these odds significantly worse. The first symptom Alice’s family noticed was a small lump on her neck, she was completely healthy otherwise. It took around 6 weeks to diagnose due to lack of knowledge available to local GPs and local hospitals about rhabdomyosarcoma. Once the ideas of various infections and cystic structures were dismissed an MRI revealed a solid tumour and Alice received a referral to the oncology department at Great Ormond Street Hospital.

GOSH provided Alice's probable diagnosis within a day and commenced the diagnostic process involving a biopsy, lumbar puncture, blood tests and PET scans. Full diagnosis revealed that Alice had stage 4 alveolar rhabdomyosarcoma with the primary tumour attached to the submandibular gland in her neck with positive lymph nodes and a tiny tumour in her lung. Her treatment begun immediately as the tumour was compromising her airway.

Alice was treated under the care of GOSH and Jacksonville, University of Florida Health Proton Therapy Institute. She received a combination of intensive in-patient chemotherapy, out-patient maintenance chemotherapy and radiation over a period of almost two years. The treatment involved spending 11 weeks in Florida receiving proton radiation which is currently unavailable in the UK. Proton radiation is a highly targeted form of radiotherapy - the proton beams kill the cancer cells and cause less damage to surrounding healthy tissues. This is particularly relevant to young children so that long term damage can be limited. When Alice relapsed she had chemotherapy at GOSH and travelled to the Emma Children's Hospital in Amsterdam for AMORE which involved surgical removal of the tumour, brachytherapy and reconstruction.

Throughout the journey Alice’s parents met a worldwide network of medical professionals and families with children undergoing cancer treatments. They became increasingly aware of the lack of funding and clinical research in to the treatment of children’s cancers. And so Alice’s Arc was born with a commitment to help find a cure with less toxic treatment options.

During her first treatment:

Alice spent 30 nights in hospital receiving chemotherapy

Alice received 29 proton radiation treatments involving a general anaesthetic each time

Alice received numerous blood and platelet transfusions

Alice spent 60 nights in Shared Care Hospital treating infections resulting from chemotherapy

Alice has had over 60 anaesthetics since she was diagnosed

Alice had an intravenous hickman line used to administer chemotherapy and antibiotics for 20 months