Amelia is a Family Support Worker in our Swindon team. She supports up to 25 families at any one time, helping them cope through caring for their child who has a life threatening or terminal illness. Here she shares how she has supported Max* and his family.
I was first introduced to Max* and his family when he was going through intense chemotherapy. He was just over a year old and had been diagnosed with a tumour in both his lungs and at the base of his spine. The family were spending many long days in hospital, with many more ahead of them.
His parents spent their time divided by hospital appointments, balancing their home life and bringing up their other two children. I supported the family during this time, through the punishing chemotherapy, sitting with Max so they could grab some lunch, or doing simple things like the school run. I was able to give them time together as a family and space to rest to keep up their strength to support their son.
I spent time with his siblings too, giving them opportunities to play, make things and various trips out, which included their very first trip to the cinema! It humbled me to know that I was able to aid them to experience that.
During his chemotherapy, Max got very poorly and had to spend some time in intensive care, a tough environment for anyone to experience, let alone a child. I sat with him and held him while he slept off his infection, a side effect from his treatment.
The family were understandably overwhelmed being in this new environment, having to walk through the ward and seeing hospital staff resuscitating other children in front of you is a very frightening place to be. I was there, to provide them with emotional support if they needed it and reassurance through this tough time.
The toughest moment for this family was when Max needed an operation to have the tumour removed from the base of his spine. I sat with them while they waited for any news. Me being there meant that they could go and get something to eat, comforted with the knowledge that if there was any update, I would be waiting.
Since then, Max has gone from strength to strength. He’s currently showing no signs of any re-occurrence of his tumours, so he can now be (with frequent medical checks), the little boy that he should be and start enjoying his childhood. It’s a privilege to support these families when they need someone to support them the most. I don’t feel like it’s one particular thing that I did to help support this family, it’s the little things that made a difference to their lives whilst undergoing such a challenging time.
*this is not his real name