Support Families Who Have a Terminally Ill Child

As many of our supporters aren’t too sure what our Family Support workers actually do for the families we support, we asked one of our FSW’s to give a quick run down on a couple of her current cases.  

I thought I would give you a snapshot of the families I am supporting; it is very varied and will give you an insight in to what I do.

 George has had a brain tumour and I have been working with him since he was 3 months old. He has not finished his treatment and mum and dad are finding it difficult to cope with his rehabilitation as he doesn’t walk or talk.  Dad works full time and mum does a lot of the care herself.   George is now 3 years old  and the family have a one year old baby Fred, and it is difficult because the baby can do more than George can do and I have got involved in taking mum to an Early Years Centre and helping her get to know other families.  It is hard as mum is slightly agoraphobic, I‘m uncertain whether she was before George’s problems or this is something that has come on following George’s diagnosis.

 I take mum, George and Fred to the centre but I am gradually weaning myself away from mum to empower her to be more proactive with the other families as she is very nervous but I am still there on the outskirts though gradually backing away.  If it wasn’t for me she wouldn’t get on a bus and take George and Fred by herself.  So whilst mum and George integrate with the other families I get time to spend with Fred.

 George’s next scan at GOSH is due in March and unfortunately the type of brain tumour he had is likely to come back, so I will be supporting the family during this time.

 I phone mum and try to see the family at least once a week and support them at all their hospital appointments.

 I have another family you may be interested in, there’s mum, dad, brother Colin and Ann who has cancer of the eyes.  I have been working with them now for the past year.  Mum and dad don’t ask for much really, what they need and what works for them is I go in and support the family.  I leave my house very early in the morning (4.30 am) to get to the house at 6 am so mum and dad can take Ann to London for her treatment.  If dad can’t take the time off work, I would then drive her up to London, but on the whole I am mainly supporting Colin the healthy brother and as I walk in mum and dad have the car engine running and they are off.

 I then stay in the house and it enables mum and dad to go with Ann for her treatment and not have to worry, it also means Colin can stay in bed and bit longer.  I wake him up, get him washed and dressed and make him breakfast and take him to school.  Mum is really, really adamant that Colin’s education is not affected by Ann and her illness and nor is Colin as a person.  Colin is a very confident little boy and this is what works for this family. 

 I normally call mum after I have dropped Colin at school and leave a message to let her know everything is alright. 

 I find it so interesting that I have so many different families the only link between them all is they have a poorly child.

 So everybody deals with it differently so I bend and flex with them whatever way they want, which keeps me on my toes and is never boring.

 Then there’s Jenny, I may have told you about this family before.  She had a brain tumour then relapsed and had radiotherapy.   Mum is very concerned and upset as she is having lots of problems at school, she isn’t coping with the work and she should be in year one but has gone back down to reception class where her younger sister is and unfortunately she is still struggling with the work . 

 I was and checked with mum when her next scan was due as I fear maybe something was back, mum contacted the hospital and it appears that she may be struggling due to the radiotherapy she has had.  Radiotherapy whilst great at killing the cancer unfortunately also can affect other cells and being unable to cope with school work may be a result of that. 

 Mum is very concerned as she is having trouble dressing herself; she has to tell her when to drink and eat so there is something going on.    Dad has gone back to work but mum is finding it really hard, she said to me she felt like everybody had pulled out, which is what happens at the end of a treatment, except for Rainbow, and she is left to get on with it.

 For now we just hope that Jenny picks up.

A day in the life of Rainbow Trust’s Family Support Workers…

5am Ruth from our Kendal Team leaves home to collect mum and child to drive them to the Royal Victoria Infirmary in Newcastle for the child’s weekly chemotherapy treatment.  Mum doesn’t drive and without Ruth in her Rainbow Trust Kangoo it would mean an overnight stay in hospital following the nightmare of public transport.

7am Louise from our Southampton Team prepares to provide one-on-one support to siblings, who are coming to terms with the terminal illness of their brother, by taking them on a day trip, offering them vital time to talk to a trusted adult who understands some of what they are going through.  Louise has provided regular support to the family, since their son was diagnosed 18 months ago, and is a familiar face that the children look forward to seeing. 

9am Catherine from our County Durham Team supports a tearful mum as she buys her child’s first school uniform even though she does not know whether her child will live long enough to wear it.  The mum had been planning this shopping trip before her child became ill and thought that it would seem as though she had ‘given up’ on her child if she didn’t prepare for that all-important first day at school. Having the reassurance and support from Rainbow Trust helped her to understand that these feelings are ‘normal’ and that other families have faced the same dilemmas she has.

11am James from our Manchester Team accompanies a family to a consultation about the remaining options for the treatment of their child’s cancer.  Hospitals can be very frightening places and parents find that it helps to have their family support worker with them during appointments.  Not only because we have heard it before, but we are also able to understand the medical language and can spend valuable time after the appointment ensuring that the family are able to fully consider the options open to them.

1pm Clare from our Swindon Team provides emotional and practical support for a family at the funeral of their child.  As well as being with the family on the day of the funeral, Clare will remain in contact with the family offering on-going bereavement support for as long as the family need it.  This support can vary from family to family and may range from having a cup of tea with a mother who wants to remember the silly things that her child did and be able to laugh and cry at the same time with someone who knew her child, to individual work with brothers and sisters helping them put together a memory box to remember their brother or sister and the time that they spent together.

3pm Diane from our Surrey Team visits a sick child in Great Ormond Street Hospital, the child’s mum has to go home to her three other children, desperately trying to keep the family together through their ordeal.  Diane is a welcome face bringing valuable distraction for the child during their six weeks of unpleasant treatments.  Spending time with a child in hospital  gives mum a much needed break and time to focus on her other children as well as being a ‘new’ visitor for the sick child – someone who is there ‘just for fun!’

5pm Time for tea! Matthew from our Essex Team supervises tea with the siblings of a sick child, keeping them entertained whilst mum and dad spend precious time together with the sick child who is bed bound.  Sometimes it is the little practical tasks that make all the difference to a family coping with the unthinkable – someone to make the tea and clear up afterwards just gives families that vital breathing space.

7pm Caroline from our Surrey Team visits a new family to assess what support Rainbow Trust can offer them.  They have been referred by Great Ormond Street Hospital as their child has a very rare genetic condition that has been difficult to identify and treat.  Mum, a single parent, has had to give up work and with four other children is simply not coping.  Caroline will appoint a Family Support Worker to this family who will work with them – sick child, siblings and Mum – to enable them to deal better with their circumstances.