By Ellen Armour | Project Leader
“When we had our babies, we never imagined we might not see them grow old.”
At the start of 2023, aged two, Ellis was admitted to hospital on several occasions with seizures. He was diagnosed with stage four neuroblastoma, a rare type of cancer, and was given a 44% chance of recovery.
“I cannot describe the feeling of devastation, terror and shock. A feeling of pure heartbreak and desperation. I could hardly breathe.”
“Ellis was terrified of everyone and everything, he became withdrawn. One minute he was playing with friends, the next he was being pinned down for cannulation and tubes down his throat.”
Before Ellis was diagnosed, Chloe had her own business but due to Ellis’ condition she had to stop. This had a big financial impact on the family and took an emotional toll on Chloe.
“Your life can just change in one instant. This new life terrifies us and is so far from our everyday ‘normal’ life.”
In March 2024, after being referred to Rainbow Trust, Family Support Worker Jayne started supporting the family at home and in hospital.
Jayne’s support was vital during these long days in hospital. She provided emotional support, listening to the family’s worries and concerns; respite, allowing Chloe and her husband Neil time to get some fresh air; and arts and crafts for Ellis, giving him a distraction from his treatment.
For Chloe, Jayne’s support has been crucial as she struggled to come to terms and cope with Ellis’ diagnosis, the huge change that this brought, and his future. Jayne provides a safe space for Chloe, giving her the chance to offload.
With the countless hospital appointments and treatments, Chloe has found trying to remain present for her six-year-old daughter Lily very hard.
“Overnight I have become a full-time mummy and medical carer. But I’m still a mummy to a little girl who needs me, and I’m trying to keep family life as normal as we can.”
Jayne helps Chloe and Lily to have more one-to-one time by supporting with after school activities. When Ellis has been unwell, Jayne has picked him up from school and taken him home. Having Jayne’s support means that Chloe can spend meaningful one-to-one time with Lily, without worrying about Ellis. This support also ensures Lily can maintain her routines and not miss out on childhood moments with her mum.
Thanks to donations from supporters like you, Jayne continues to provide reassurance and a sense of stability for the family at such an uncertain time. Thank you.
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