Lilly's Story.


(consent was obtained to use this photograph)

Lilly (not her real name to protect confidentiality) is a 13 year old girl with an advanced brain tumour. Her parents are unemployed and have no money for basic necessities let alone for medications, incontinence aids or transport to hospital outpatients for further chemotherapy. Lilly has lost her speech and the use of her right side, is doubly incontinent and is so nauseated that she cannot sit up.

Dr Adina and Mihaela (community nurse, Team Leader) visited Lilly at home and assessed her symptoms. Adina prescribed steroids to reduce the swelling in Lilly's brain. This is only available as an injection in Romania and at first Lilly screamed and refused to let Mihaela inject her. Mihaela respected Lilly's wishes and instead of forcing the treatment on her, sat and played and spoke gently to her. The next day Mihaela brought a toy mouse to visit with her. After several minutes of relaxed play, she gently mentioned again the injection and explained why she and Dr Adina felt it might help Lilly to feel a bit better. Lilly spontaneously rolled over onto her right side and exposed her hip communicating her consent to receive the injection. After several days of high dose steroid treatment Lilly stopped vomiting and was able to change her position.

Healthy children need to be encouraged to wash and clean their teeth but skin and oral hygiene are even more important for those with chronic and life-limiting conditions, if mouth infections and pressure sores are to be prevented. Lilly's family would not have the means to provide the number of incontinence pads needed to provide sufficient changes to protect her skin from excoriation nor did they see the purchase of a toothbrush and toothpaste as a priority. These basic items were provided along with education from the nursing team about how to keep Lilly clean and comfortable.

Domestic issues were further complicating Lilly's overall care and the capacity of her family to cope. Ramona, our social worker, became involved and was able to advise and support Lilly's mother to get her legal papers in order so that she could apply for the benefits she is entitled to. Ramona is also able to work with the nursing team to provide emotional and spiritual support for the family as they prepare them for Lilly's physical deterioration.

Sadly, Lilly died at the beginning of June. The Casa Albert team's care and support enabled her family to manage her death at home. The team has continued to provide bereavement support and the family are grateful for the quality time that they had with their daughter in her last weeks of life.

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