Ellis' Story

Pure heartbreak and desperation

“On Tuesday 18 July 2023 our world collapsed as we were told our baby Ellis has a tumour. I cannot describe the feeling of devastation, terror and shock. A feeling of pure heartbreak and desperation. I could hardly breathe.

“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 frequently unwell, went off his food, and wasn’t sleeping well, often waking in pain. He was diagnosed with stage four neuroblastoma, a rare type of cancer, and was given a 44% chance of recovery.

“‘Please just help our baby’ I said [to the consultants]. It was so difficult to see Ellis in pain.”

Endless hospital appointments

Ellis’ treatment was aggressive. To prepare for each session, Ellis had to stay in hospital overnight, to go for scans and to have a cannula put in his arm. These days were long and distressing for Ellis.

“He was terrified of everyone and everything, he became withdrawn.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.”

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.

After many rounds of chemotherapy, stem cell harvest, a 6-hour surgery to remove his tumour and kidney, a nine week long hospital admission, and countless other procedures, Ellis is now in remission

Time to be a mum and a family

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-toone 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.