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Billie’s Story

Billie was born on 25 April 2007. She lived in Exeter with her parents Sam and Terri and three year old brother Joe. This little family was hit twice by cancer in one year. In February 2011 mum Terri was diagnosed with breast cancer. She had a mastectomy and a large tumour was removed. She then had further surgery to remove lymph nodes. This was followed by several months of chemotherapy and then five weeks of daily radiotherapy.

While Terri was undergoing chemotherapy, Billie began to show signs that all was not well. At first we all thought it was just a reaction to her mum’s serious illness. Then at the beginning of June 2011 she started getting wobbly, her eyes started drooping and she had difficulty swallowing.

Sam and Terri’s GP told them to take her straight to hospital, not waiting for a referral. The same week she had a MRI brain scan and was diagnosed with Diffuse Intrinsic Pontine Glioma, an inoperable tumour in the brain stem. This is the worst type of brain cancer. It is too dangerous to operate because so many of the brain’s vital functions are located in the brain stem.

Only about 40 children in the UK are diagnosed with this form of brain tumour each year. The survival rates are extremely poor with most children not surviving more than eighteen months. Radiotherapy can be used in an attempt to shrink the tumour and reduce symptoms, but frequently the tumour starts growing again within six to nine months, this time more aggressively.

Following the brain scan and diagnosis there was a desperate search to find a hospital which could start treatment immediately. After a few days Billie was admitted to University College London Hospital where she completed a six week course of radiotherapy in early August 2011. While this was going on Terri had to come back to Exeter for her chemotherapy treatment!

Billie responded well to radiotherapy and was well enough to start school at the beginning of September. This was wonderful as there were many days when we thought this would not be possible. However we knew that radiotherapy gives temporary respite only.

Apart from radiotherapy there is no other treatment available in the UK for Billie’s type of tumour. So after talking to cancer charities and to other families with the same experience, and an exhaustive search for all possible treatments anywhere in the world, many of them experimental, the decision was made to seek treatment in America.

When the search for alternative treatment began, Sam and Terri’s friends started a fundraising campaign, called the Billie Butterfly Fund. It was given this name because her symbol at nursery was a butterfly and she loved them. A Trust was established in Billie’s name with the stipulation that any money not needed for her treatment will be used to support research into this devastating type of brain cancer.

The family stayed in America for 5 weeks in autumn 2011 while Billie started her treatment and Sam and Terri were trained to administer her medication.  It was a difficult time as Billie lost her appetite and at one point had to be admitted to hospital. Still not eating, she was fitted with a NG tube so that nutritional fluids could be fed through her nose direct into her stomach.

The family returned home on 21 October 2011 and Billie continued her treatment at home. She had to carry her medication in bags in a back pack which also contained a pump so that each day she had regular infusions direct into her blood stream.

Although there is no cure for Billie’s type of brain tumour, the treatment in America has improved survival rates in similar cases to Billie’s and is monitored by the responsible US Government agency. Most importantly it offered the prospect of improving Billie’s chances of beating this dreadful disease.

Any experimental treatment attracts widely different views and the family knew there were no guarantees, but they were not prepared to sit back and do nothing. There was a chance that it might improve Billie’s chances and it may well have helped extend her life. However in the end she could not beat the dreadful statistics for this sort of tumour. Billie died peacefully at home on 1 June 2012, nursed to the end by her devoted parents Sam and Terri, and surrounded by her family. She was a greatly loved, special, brave little girl and will never be forgotten.