Alice's Story

 
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Alice’s story

Alice loved lots of things, spas, hotel stays, London, shopping, theatre and theme parks. We would like to be able to help families enjoy some of the things she treasured and were even more special to her after her palliative diagnosis to spend time with her family creating memories.

Life changed in January 2013. Alice had been a little unwell leading up to new year, one trip to the doctors with a possible diagnosis of glandular fever led to another trip when she started being sick. She was referred to Sophie's place at Winchester hospital where the next day she was scanned to reveal a very large tumour in her liver. Alice became unwell very quickly. A biopsy at Kings College Hospital led to a diagnosis of a very rare cancer called undifferentiated embryonal sarcoma. There weren't many cases recorded on this type of tumour.

Alice went on to have two cycles of chemotherapy with many complications including seizures, a weakening of the heart muscle and chronic sickness and a lengthy stay in hospital. It was decided that in March Kings would operate to remove the tumour. After 3 hours into surgery the surgeon came and saw us and told us that Alice’s tumour was unremovable as it had grown in size to over 18cm and more chemo would need to try and reduce the size.

Two months of more chemo and lots of conversations with national and international teams it was decided that Alice's only hope was for her to have a liver transplant. Alice had a successful transplant in August 2013 and 2 more rounds of chemotherapy afterwards. Life's had its ups and downs for Alice including a diagnosis of epilepsy after chemo and kidney problems. In March 2016 when we all thought she was safely staying in remission, life changed again with a return of her cancer, this time in her 9th rib.

Alice had radical surgery to remove the cancer, followed by chemotherapy and radiotherapy. Unfortunately, in November 2016 Alice's cancer went to her lungs which resulted in no curative treatment. Alice had some chemotherapy to help her have a little longer but being the brave and courageous girl, she was she decided quality of life was better than quantity and decided instead to write her bucket list and enjoy the time she had left with us her family. We were lucky enough to have friends who set up a just giving page for Alice. This enabled us to make some fantastic memories with Alice and helped her massive love of shopping.

We want our charity to help other families whose children are given the diagnosis as we were to make memories precious.