By Tracey Brand | Director
It’s that time again! I hope that the start of 2018 has been good. For us we have hit the ground running. We often don’t realise the level of vulnerability that our patients and their families experience; being at home with a terminally ill child hoping that they are doing everything they can to ensure their comfort. I feel that this vulnerability was more evident to us as a team over the December period. Majority of services are not running at full capacity as many people are on holiday and families don’t feel that they can “interrupt” family time. Between Christmas and New Years two of our little ones started deteriorating. The families very reluctantly contacted us; continually apologising for disturbing our family time. That selflessness left me speechless. At one of the most critical and difficult times of their lives and they are worried about disturbing us.... Again it made me realise the incredible privilege we hold – being there for a family at their most desperate time of need, often being nothing more than a friendly, caring voice. Both of those precious ones left us on 1st January 2018 – a bittersweet start to the year but a humbling one that made us realise how blessed we are and made us hold our families that little bit tighter.
But not all is sad. The resilience of children never seems to amaze us. Their resilience together with their parents’ tenacity often leaves us speechless. One of these children is 5 year old E. She was diagnosed with a brainstem glioma which did not respond well to treatment. The team were called in as the doctors felt that there was nothing more they could offer E and she was deteriorating rapidly. The doctors hoped that we would be able to get her home, help the family deal with her symptoms and ensure she had a peaceful death. That was in September 2017. Over November her condition deteriorated even more. She went from being wheel-chair bound and communicating slightly to not being able to sit, communicate and often appeared unconscious. We discussed with the family that the tumour has grown and it looks like the end is near. We improved her pain control, provided the family with all that they would need to keep her comfortable and spent time doing pre-bereavement work. Imagine our utmost surprise when in December the family called us to say she had woken up and was communicating with them again. E has slowly improved and today is walking (although not that steadily) and talking. Although her prognosis is still poor her quality of life is amazing. Her greatest joy is going in her wheelchair to the local shopping mall to window shop! Resilience, tenacity and good palliative care – that’s the only way to describe it!
By Tracey Brand | Director
By Tracey Brand | Director/Paediatric Palliative Care Social Worker
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