Supporting Terminally Ill Children

Darren’s daughter, Grace, was diagnosed with a brain tumour when she was 18 months-old. Rainbow Trust Family Support Worker Leanne supports Grace and her family.

Darren tells us what it’s been like to deal with cancer and how Rainbow Trust has made a difference to his family’s lives.

“Grace was one of those children who went straight from crawling to running so when she started falling over, we thought she was just clumsy.

She became less mobile and then she started having tantrums so we took her to a paediatrician but he couldn’t find anything wrong. It wasn’t until she was sick at nursery that she was rushed to A&E where they did a brain scan and we were told that Grace had a brain tumour.

I was devastated – I was supposed to protect her from everything but couldn't protect her from cancer.

It all happened so quickly. Grace was diagnosed on the Tuesday and on Wednesday had brain surgery to remove the tumour. She was in the Paediatric Intensive Care Unit and had a Hickman line (a venous catheter) inserted ready for her six months of chemotherapy to start a month later.

Twelve hours after the operation Grace bounced back. She hadn’t been able to move for so long that as soon as the pressure was released, she was able to move again and she bounced everywhere. Fiona, my wife, and I had to restrict her movement as she had the Hickman line so we had to try and keep her still and stop her from jumping around.

Watching her go through the treatment was really hard; the worst possible thing is you know it’s this terrible poison going into her body and it drained her.

She was so tired.

One of us would stay at the hospital from 9am to 7pm and then go home. The other one would stay overnight so the next morning we were both exhausted. Every morning. Every day.

The worse thing about cancer is that you have no control at all. With most things you do: if Grace has a cold, I can wipe her nose, but with a tumour I can’t do anything to stop it.

I felt useless and that I’ve failed her as a dad.

Fiona spoke to Rainbow Trust Children’s Charity about helping us and Leanne, a Family Support Worker, started supporting us. Leanne takes Grace out for a couple of hours to the park or soft play. This gives her some fun time and it gives Fiona and I a break to do housework, or go shopping, or even just sleep. Leanne also helps us talk about our worries and concerns, about how this is affecting us, giving us emotional support.

It is such help. I honestly don’t know where we’d be without Leanne.

When Grace was first diagnosed I was made redundant. I felt like a failure, I am so used to providing and doing everything for my family and I wasn’t even bringing in any money. Then I was diagnosed with depression, anxiety and stress as it was all just too much.

Family Support Worker Leanne has been fantastic and brilliant for us. We’d be lost without her. We can both talk to her and she knows so much about children's illnesses and how it affects parents' mental health. She offers so many options and thinks outside the box, I can’t praise her enough for all that she has done for us. Talking to her is such a helpful release for us, she listens and the best thing is, she cares. She treats Grace like her own.

The one positive out of Grace’s cancer is Leanne and Rainbow Trust.”

When serious illness affects a child, family life is turned upside down and time becomes more precious than ever. Rainbow Trust pairs each family with a dedicated expert Family Support Worker to help them face and make the most of each new day.

With your help we can ensure a seriously ill child and their families have the time and support of a Family Support Worker.

Thank you.