The Spicer's Story

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Ellen is a Family Support Worker for the South West team. She has a background in Primary School teaching and applied for a job with Rainbow Trust when looking for a career change. Ellen joined Rainbow Trust in October 2020 and has enjoyed providing support to many families in a variety of circumstances since then. The Spicer family were one of the first families Ellen met who were completely new to Rainbow Trust and she has had the pleasure of supporting them from the point of their daughter’s diagnosis all the way through to her recovery.

The Spicer Family Story

I started supporting the Spicer family in October 2021, during the Covid-19 pandemic. Esme had been recently diagnosed with Rhabdomyosarcoma, a rare form of soft tissue cancer at the age of 4. I met Anne, Ben and Esme at their home with my manager, Charlotte. Anne was understandably emotional and still processing the news of Esme’s diagnosis at the time. Neither Anne or Ben knew what the future looked like for Esme and had been referred to Rainbow Trust by their social worker from Young Lives vs Cancer for some additional support. Esme had finished her second round of chemotherapy treatment when I met her and had also just had her nasogastric tube fitted. Esme did not make eye contact with me or Charlotte and did not speak to either of us for the duration of the visit. She appeared anxious and was snuggled under a blanket on the sofa.

Charlotte and I spoke to Anne and Ben about the support we could provide. They were unsure about what they wanted or needed at the time. I explained visits would happen at their pace and I would help Esme feel comfortable with me by allowing her to choose what she wanted to do with the time. I started visiting Esme at home initially. Over time, we got to know each other and Esme started to become more confident. Esme soon started taking me on imaginary adventures all over the world from the comfort and safe space of her own bedroom and shared her interest in the television programme Animal Park with me. Esme also had me wearing her fancy dress clothes for some of our adventures too, just to make sure I was fully in character!

I also visited Esme at Bristol Children’s Hospital during the times she was there having her treatment. These visits gave Anne and Ben some much needed time to leave the hospital for a break and some time to themselves. These visits were also very different to my home visits. Esme was feeling very unwell and tired so did not have the energy to play with me or talk. I sat in silence with Esme while she slept or rested watching television but by being with her I gave Anne and Ben the confidence to leave her knowing someone she knew was with her and making sure she was ok.

As my support for the family continued, I met Olivia, Esme’s older sister and started spending time with her too. I took Olivia out on her own at times when Anne needed to be at medical appointments with Esme. This gave Olivia some attention for herself and time to do things she wanted to do as well as time away from the cancer bubble her household had become. I also provided opportunities for the family to enjoy days out together at Paulton’s Park and Cotswold Wildlife Park.

As Esme’s treatment progressed, she was able to start school and Anne could also return to work after a long period of leave to be with Esme. I supported this stage of the family’s journey by picking Esme up from school and meeting Olivia at home. I spent time with both girls to enable Ben to continue working from home and to avoid Anne having to rush home from work to be with the girls after school. I took them both out for hot chocolates or to the park to play. For my final visit, I took Esme and Olivia out for the day to Longleat Safari Park.

Ben and Anne have been very appreciative of the support I have given them over the last two years and have both said it has made such a difference to this difficult time in their lives. Anne said

“The time Ellen has spent with Esme has allowed me to go for walks, to breathe or cry or both. The girls adore Ellen and are always excited when we mention she is coming. We are so thankful for everything Ellen and Rainbow Trust have done for our family”

Ben said

“Thank you so much for your support. It has helped so much and you have been a great support to Esme and us all. The girls will miss you!”

It has been a pleasure to support the Spicer family and to observe how much Esme’s personality has grown since I met her. She has come so far and I’m glad I have been able to provide the support this family needed to get through the difficult journey they have been on together.

Throughout 2023, Anne and Ben have completed various challenges including the London Marathon and a 50km walk to raise money for us. We are very grateful to them for taking the time to do this to enable us to continue supporting families like theirs.

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