Louisa Buttery

After visiting the local hospital she was immediately transferred to Great Ormond Street Hospital where an intense week of testing revealed that Louisa had leukaemia. “We were completely devastated.”

That evening Louisa had her first of many trips to theatre. Before she began chemotherapy, a central line was inserted into her chest to allow easy access for IV medication and for blood to be taken.

The line – also known as a Hickman Line – is left in for the duration of treatment for easy access and to avoid repeated needling.

Unfortunately, Louisa experienced complications and she spent seven days in the intensive therapy unit (ITU).

For the next six months, Louisa stayed at Great Ormond Street Hospital where “she received such wonderful care.”

Louisa’s parents tell how much the staff at the hospital helped their family through this difficult time. “During our months at GOSH we developed some wonderful relationships with other families, nurses, housekeepers and the hospital chaplain…someone was always there to support you and raise your spirits.”

Louisa’s big sister Charlotte, then four, and big brother Eddie, two, made frequent visits to keep her company. “Charlotte and Eddie regularly visited their little sister and enjoyed their trips to London. It was quite an adventure for them.”

Davina and Darren wanted to make sure that all their children received the love and support they needed. “With the invaluable help of grandparents and family, we were able to establish a time table ensuring all the children were loved and cared for.”

Life with Louisa away from home was difficult for the family. She was able to travel home a few times during her treatment, but there were almost daily trips to the local hospital for blood transfusions.

After three courses of chemotherapy, Louisa was still unable to achieve remission. Doctors advised that she might have a chance with a bone marrow transplant and family members were tested for a suitable match.

While waiting for the results, the Buttery family was greatly encouraged by a special blessing on Louisa from the Archbishop of Canterbury during his visit to the hospital. Much to their joy and relief, they were told that Eddie was a 100% sibling donor match.

In November 2004 Louisa underwent a successful bone marrow transplant. The blessings continued for Louisa as she went into remission before the transplant from a fourth course of chemotherapy. She was able to go home in time for Christmas.

“Once home, Louisa was cared for by a wonderful team of community nurses” her parents recall “I missed the security and comfort of the hospital when we came home and looked forward to our visits to outpatient facilities. Not quite the same for Louisa as she was the one having the blood tests.”

Despite frequent trips to both GOSH and the local hospital, the Buttery’s lives were beginning to settle down. Charlotte has started school but Eddie has no idea that he saved his sister’s life. “He’s still unaware of what he has done for his sister. He is a brave and special boy.”

Gradually the hospital trips became less frequent and Louisa began to enjoy life outside of the hospital environment, joining play groups and music clubs.

Davina and Darren also had to learn to let go of their worry and enjoy time with their daughter. “It took a while not to link certain symptoms like nosebleeds thinking she was relapsing.”

Two years later, Louisa’s parents describe her as “a healthy child full of energy and life. Her indomitable spirit is an inspiration to us all.”

Although she requires daily medication, regular immunisation and continual follow-ups, the Buttery family is looking forward to their future with Louisa.

“We will forever be grateful to Great Ormond Street Hospital and the leukaemia charities for all the remarkable work they do.”

Louisa, together with CHILDREN with LEUKAEMIA trustee Linda Robson, launched our ‘Small Change, Big Difference’ campaign with the Hilton in the Community Foundation.

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