Elizabeth's story

On the 3rd January 2017, siblings Ella, Lucy and Johnny were delighted to welcome a new baby sister into the world. Elizabeth or Biff (as she was often called) was born on 3rd January 2017, a happy and healthy little girl.

At 4 months of age, she started becoming constipated and a bit unsettled, then one evening, her mother noticed a slight fullness on one side of her tummy. Initially diagnosed with constipation, Elizabeth stopped feeding and stopped passing urine and was admitted.

Three weeks after first developing symptoms, a large mass was seen on her X-ray. An ultrasound showed a large tumour on Elizabeth’s kidney and she underwent a 7 hour major surgery to remove the tumour. The histology came back as a malignant rhabdoid tumour with evidence of spread to the lymph nodes.

We had a meeting with the consultant, and she explained the poor prognosis. I felt numb and angry and didn’t really believe what they were saying.”  

Her mother Kathryn described the next few months as a blur of chemotherapy, inpatient stays, transfusions and investigations. A few weeks into treatment, Elizabeth stopped feeding and needed to have an NG tube fitted so she could be fed.

A diagnosis of cancer affects the whole family

Every time we were admitted I missed my children so much…. but the children were amazing at coping. They never knew if I would be at home after school or in the morning.”

A diagnosis of cancer in a child does not just affect the child, it affects the whole family. “We loved Christmas day but could not help feeling emotional and worried knowing it could be Elizabeth’s only Christmas.”

Sadly, Christmas 2017 did turn out to be Elizabeth’s first and only Christmas.  In March 2018, Elizabeth became increasingly unsettled and her tummy more swollen. Her parents took her for assessment and 20th March, Elizabeth had an ultrasound scan to investigate.

Her parents Kathryn and James received the news that no parent ever wants to hear.  Elizabeth’s cancer had relapsed in numerous places. There was no effective treatment available so the plan was to keep her as comfortable as possible.

Forever 15 months

Elizabeth was cared for and kept comfortable at Little Bridge Hospice in Barnstable. She passed away on 14th April 2018 surrounded by her family. She toucbed so many hearts in her short life.

Her parents have decided to set up a named fund in Elizabeth’s memory to honour her and to help other families. Kathryn said, “My main aim is to fund research to help find effective treatments for other children and to support families, like you have for us. “

A wonderful way to honour a beautiful little girl.