a little boy wearing a hat


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 at GOSH 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. Alice spent almost a year clear of cancer before masses were detected in her abdomen and pelvis in July 2019. There were no options left. Alice died, aged 7, in October 2019, over 4.5 years after her diagnosis.

She was given a 50/50 chance of survival over 5 years. However, relapse made these odds significantly worse - 8%. 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 and childhood cancer symptoms. 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, where she was diagnosed with rhabdomyosarcoma.

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. When Alice's cancer was discovered in the new sites of the abdomen and pelvis, there were no curative options available. She had exhausted treatment options.

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 cancer journey:

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 received 7 cycles of VIT chemo for her relapse

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

Alice had almost 100 anaesthetics during her cancer journey

Alice had a hickman line and port used to administer chemotherapy and antibiotics for 30 months

Alice spent 3 weeks in hospital, in Amsterdam, undergoing the AMORE procedure