Supporting Siblings of Terminally Ill Children

Petra’s sister, Rowan, was diagnosed with a brain tumour five years ago.  She has undergone years of treatment and her big sister, Petra, has been by her side all the way.

Petra, like most eleven year olds, just wants a “normal” family. She wants to be able to go to the park with her sister or play hide and seek but can’t as Rowan is visually impaired, a side effect of the tumour. “It makes me sad because we can’t do things like walk to the park,” says Petra.

In October of last year, Rowan got septicaemia and was in hospital for a few weeks. Beth, the girls’ mum, had to be in the hospital with Rowan. It was Petra’s birthday and she and her brother were looked after by a number of friends and family members. “It was annoying not having the perfect birthday, having all my family together,” says Petra.

Janet, one of our Family Support Workers, takes Beth and Rowan to hospital appointments which means that Petra’s dad can take her and her brother to school. With Janet’s help, Petra doesn’t have to go to the hospital with her sister any more. She can continue with her own life and all she likes to do.

Janet’s help allows the rest of the family to continue with their usual routines as much as possible and the Family Support Workers’ support is aimed at normalizing life for these families who find themselves in a “new normal.” Rainbow Trust is acutely aware of the impact that a sick child has on his or her siblings and Family Support Workers do as much as they can to support siblings.

Beth and Will organised for Petra to have some counselling to help her through her difficulties with Rowan’s illness but she didn’t feel that the counsellor understood her so did not continue. Our Family Support Workers do understand and can help, they have seen so many siblings struggling and have found ways to help siblings cope and sibling support has become a big part of our service.

While this extra-ordinary young girl watches the world go by wishing her family life was as ordinary as her friends, she would like to tell other siblings in her situation, “Don’t hide away, don’t bottle it up, if you find it awkward talking, write a diary or talk to cuddly toys, tell somebody so you don’t feel constantly upset.”

Peter was two years old when he was diagnosed with leukaemia.  He was admitted to hospital in Oxford for treatment.  Flora, his mum, stayed with him and her husband took his twin brother, Thomas, home to Reading.  

The family was quickly referred to Rainbow Trust and introduced to Family Support Worker, Jess.  She takes Flora and the boys to hospital appointments, plays with Thomas while Peter is in treatment, and when they are both home, she plays with them together. 

Peter is very clingy to his mum, which means that Flora struggles to do anything without them, so having Jess as a playmate helps her immensely.  She can take a shower or do some chores, which gives her some semblance of a normal life.

“It is heart-warming to know that there are people who dedicate their time to others.  Our Family Support Worker, Jess, has been an angel.”      

Flora, Peter and Thomas’ mum