Supporting Terminally Ill Children

“Belle was our rainbow baby. She is our only girl and the youngest of five children. At the age of seven months Belle became incredibly irritable. She begun to regress in her development and was continuously in and out of the doctors and hospital,” said Belle’s mum Jemma.

At around 10 months old Belle began vomiting randomly and sleeping more. This continued over the next few months, gradually getting worse. By 14 months Belle slept for 23 hours a day, only waking for pain relief and a bottle. Her development had ceased and her head tilted and drooped.

Jemma and her husband, Lee, took Belle to their local hospital many times but had no answers, despite the severity in her decline.

Desperate, they took Belle to Southampton General Hospital. She was so unwell on this admission that an MRI was ordered that night. Jemma and Lee were told that Belle had a brain tumour that was now so large it occupied two thirds of her brain.

Belle immediately underwent seven hours of surgery, which saved her life. They were able to fully remove the tumour, but Jemma and Lee were told she would never walk or talk as to get at the tumour they also had to remove a quarter of her brain. They were devastated.

Due to the high grading of Belle’s tumour she required 14 months of intensive chemotherapy.

This felt worse than all that they had endured already. During this time Belle was seriously unwell and it was heart-breaking to witness.

They were referred to Rainbow Trust for support and Family Support Worker Mandy has been there for them. Mandy was able to come to hospital and give Jemma and Lee emotional support while Belle was admitted. Jemma says: “This was incredibly helpful. Mandy quickly became a huge part of our lives and is always compassionate to our needs. There have been so many ups and downs during our cancer journey and Mandy has been there throughout.“

The pandemic has been incredibly hard for the family. As Belle has been having chemotherapy, her immune system is very weak so they had to shield. Having five children at home, unable to go out, made things very difficult. The boys would constantly argue; additionally, Jemma tried to juggle home schooling the boys with caring for Belle. At times it felt completely overwhelming to her.

Mandy worked with the children to give them time out from an incredibly traumatic experience and has given emotional support at school for them.

And she has been there for Jemma too: “I was always able to talk to Mandy when things were getting too much or when we had updates from the hospital that I wanted to talk through,” said Jemma.

Bella did start to walk and talk and hit milestones in line with her age. This is beyond anything anyone could have imagined, given she has a large proportion of her brain missing. And she has continued to surpass and surprise all who know her.

Things would've been very different without Mandy by the family’s side. Thank you for all you to do to enable this support.

Links:

• Watch a short video about Rainbow Trust's impact