At 10 weeks old, Dominic was rushed into hospital with swelling and fluid on his brain and underwent emergency surgery to remove the fluid. An MRI scan, four days later, showed a cancerous mass on his brain, spinal column and central nervous system. Doctors told the family that what they were seeing was extremely rare and unlikely to be treatable. Dominic’s parents were told he probably only had three weeks to live.
During the following week, further biopsies and tests revealed the “tiniest glimmer of hope,” remembers Natalie, Dominic’s mum. There was a chance that the cancerous cells could respond to chemotherapy drugs but the consultant was hesitant as Dominic was so small and the drugs would leave him open to any kind of infection. He had to stay in hospital for the next five months and would not leave the ward in that time. Natalie stayed with her baby boy for those five months and worried constantly about him and Zach, her other son, who she could not see. She was isolated and governed by the hospital ward and Dominic’s treatment.
CLIC Sargent referred Natalie to Rainbow Trust and Vicky, one of our Durham based Family Support Workers. Vicky visited Dominic in the hospital once a week which gave Natalie a few child-free hours where she would “grab a shower or get off the ward and relish the outside air.”
“Parents who haven’t found themselves in similar situations cannot appreciate the dilemma of having a very sick child confined to a hospital ward. Despite the parent’s need to get away from it all, there is a terrifying fear of leaving their sick child unless they can balance it with the knowledge that their child is safe and cared for. I trusted Vicky from the moment we met, in part due to the fact that Rainbow Trust workers are well known to the other families on the ward going through similar circumstances and everyone sang Vicky’s praises. Primarily though, I felt comfortable leaving my baby with Vicky because Dominic himself appeared to love the time he spent with her.”
During those five months Dominic underwent intense IV chemotherapy and against all the odds, his next two scans revealed that the tumour had reduced in size. He was sent home and allowed to return to the oncology clinic on a regular basis for the next 12 months for oral chemotherapy administered by his parents one week out of every four. Dominic had to have an NG tube fitted down his nose to administer the drugs.
When Dominic was diagnosed, Zach was five years old and he struggled not having his mum around for those five months. As much as Natalie tried to be there for Zach, she could only do so much. She told him he could talk to her about anything that was bothering him to which five year old Zach replied, “I can’t mummy, you’re never here because you live in the hospital.” Natalie was heart-broken seeing what an impact Dominic’s illness was having on his brother but she was unable to do anything about it at the time. This is where Rainbow Trust’s sibling support came in. Vicky took Zach on days out and to drop in groups where he met other children and families in similar situations. Zach knows his family life is not normal so Vicky has tried to let him do things that can help him feel more normal. At the drop in groups he can talk to other children who also have a sick sibling and he gets to do arts and crafts which is something he loves. The hospitals give their patients the Beads of Courage when they have been through various treatments so doing the arts and crafts at the drop in groups means he can take his own achievements home.
“Rainbow Trust Family Support Workers all know the siblings, they put the hours in,” says Natalie so she felt very comfortable leaving Zach with Vicky and the others as she knew they were aware of his situation and would look after him.
Shelly began supporting the family when Vicky went on maternity leave and Dominic adores her, so much so that “Shelly” was one of his first words. Once a week she visits the family and takes Dominic to soft play where he can play and be like other children his age.
Without Rainbow Trust, Natalie believes that the desperate situation they were in would have been worse. “With their help, they made our unbearable situation more bearable. Until you have walked in the shoes of a parent with a sick child, you cannot understand, but Rainbow Trust does,” says Natalie. “Rainbow Trust comes along and looks after your child for a few hours and you know you can trust them.”
Vicky’s weekly visits meant that Natalie knew she would have that break where Vicky would stay with Dominic and watch over him while Natalie went for a walk, got out of the hospital and walked into town, “just to be with other people in a normal environment. I’d immerse myself in the crowds, make phone calls or take a shower and wash my hair, without any interruption.” Natalie knew Dominic was safe, she knew that Vicky was happy changing his nappies with all his tubes etc and she knew that Vicky was an advocate for her child when she wasn’t there.
“With Rainbow Trust I didn’t feel that my coping abilities were being judged. Other family members or families were always trying to give us useful advice but unless you’ve been in the same situation it’s difficult to do this,” says Natalie. “Rainbow Trust comes along and puts an arm around you and walks with you, understanding what you are going through.” The Family Support Workers come as often as they can within the confines of their diary. Shelly taking Dominic out has been good for his development as he missed out so much being in hospital and in treatment for so long. She still takes Zach out, picks him up from school and also takes him to sibling groups.
Now that Dominic is well, Natalie knows that her family does not need Shelly’s help as desperately as others might. “Shelly does what she can. If something arose or we had an emergency, I know I could ring Shelly and I know she’d help,” says Natalie, “Rainbow Trust is fabulous.”
Mohammed died following a muscle tumour in the face that had spread to the rest of his body. For his parents, Hoosna and Jiade, Mohammed’s death meant an end to the many familiar faces surrounding them and their son during his treatment and until his death. Rainbow Trust is the only organisation that continues to support the family, including brother Fardeen (11) and sister Haagra (six), beyond Mohammed’s death.
Families tell us how difficult it is when many of the professionals who supported them move on to work with other families after their child dies.
Rainbow Trust’s support is not time limited and does not end after a child dies. We know that families may need support for months or years, and their continuing contact with the Family Support Worker who knew their child, brother or sister is invaluable.
Zak, Family Support Worker, spent time with the whole family before and after Mohammed’s death
The family was introduced to Family Support Worker Zak before the family received the devastating news that Mohammed’s tumour had spread. Zak spent time with Fardeen and Haagra, preparing them for their brother’s death, taking them to the park and giving them valuable time away from the family home.
Family Support Workers are skilled in responding to each family to meet their individual needs. They help parents face going back to work, preparing them for the many questions they will deal with and providing support for families on the anniversary of their child’s death.
When brothers and sisters are ready to return to school they may ask their Family Support Worker to visit their school with them to talk to teachers and classmates.
Since Mohammed’s death Zak continues to visit the family spending time with Fardeen and Haagra to help them understand and cope with their brother’s death and share memories of Mohammed.
The family continues to grieve for Mohammed with the continued support of Zak.
Beth is 7 years old, and lives with her mum and her little brother, who has very complex care needs and whilst Beth loves John dearly, she also has times when she really wishes she did not have a brother, any brother but especially a poorly brother.
Beth’s family was introduced to Rainbow Trust by John’s community nurses, who recognised that Beth’s mum was clearly finding it hard to balance her time between Beth and her very ill son.
Beth’s mum was very open with the Rainbow manager and said she was at a loss at how to cope with a very sick child who needed her constant attention and all the visitors who came to see him, and to find time to be with Beth.
Mum gave examples of Beth coming home from school, bursting to tell her about her day at school only to find herself saying I am busy with your brother, but once I have fed him we will talk about it, only to find as soon as she sat down with her daughter the doorbell would go and it would be the occupational therapist calling to discuss the new hoist; then the visual impairment worker; then her son would have a large epileptic seizure, and Beth would go to bed not having been able to share her special news from school.
Mum had noticed that Beth was slowly changing into a sullen and withdrawn little girl.
Various possible options of support were discussed with mum, whether our worker would support the brother, so mum could spend more time with Beth or whether the worker would become Beth’s special person and spend time with her. As well as being there for mum. Mum decided that a special person just for Beth was the answer. How right she was.
Our support worker was introduced to the family and was in the family home when Beth came home from school. She had arrived earlier to get to know mum and her son, and had in fact read to the sick boy, so mum could prepare his feeds and also have a soak in the bath – a very rare treat. So when Beth came in mum did have time to listen to what had happened at school, and then introduced the worker to Beth, Beth was delighted to hear that someone had come into the family home for her not her brother!
Our worker has become a life line for the family, she regularly collects Beth from school and they have “adventures” together visiting local libraries, something Beth pointed out she could not do with her brother, as he makes too much noise! So her homework is now always handed in on time, trips to the pet corner at the local garden centre, again something Beth cannot do with her brother, as he is highly allergic to pet hairs!
When her brother had to go into hospital for planned surgery, our worker, with mum’s full permission, was able to explain what was going to happen. Beth took this in her stride, and decided having to stay with her grumpy Aunt would be alright for the three days as our worker would take her to and from school each day and to visit mum and brother in the hospital.
Beth has become a much happier little girl. Mum is more relaxed knowing her daughter has an outlet for her energy and worries she did not have before, and that she has a “professional friend” there for her as well, just don’t tell Beth though!
Thanks to your generosity, Rainbow Trust Children's Charity were able to provide the following in 2013.
1,368 Families supported around the Country.
882,000 miles driven by our Family Support Workers to homes, hospitals and schools - almost the equivalent to driving to the moon and back TWICE !
3,273 hours of Sibling Support, mainaining school attendance, arts & crafts, cinema trips, days out at the zoo, fun and laughter.
10,749 hours of home support, including emotional support, respite, countless meals cooked, baths run and story books read.
6,804 hours of helping to organise appointments, explaining illnesses and treatment, looking after siblings and staying with sick children.
851 hours of bereavement support for the entire family, face to face and over the phone, at any time of the day or night.
Please help Rainbow Trust to support even more families who have a child with a life threatening illness in 2014.
The following case study shows the ways that support is given, how the type of support can change depending on the situation and how the relationship between a family and their Family Support Worker can develop, sometimes in a short space of time.
A TIME LINE OF FAMILY SUPPORT WORK
I first met Sophie’s family in hospital where she was receiving chemotherapy and within two months of her diagnosis of osteosarcoma (a rare type of bone cancer).
I listened as the parents safely and honestly expressed their mixed emotions of anger and frustration, together with their concerns (particularly as they considered there had been a delay in obtaining a diagnosis). Being able to voice these feeling/thoughts helped them to process and start to come to terms with the turmoil in their lives and it was humbling to realise they had been able to do this within the first hour of my introduction.
It soon became clear about the additional difficulties they were experiencing - both non drivers, managing two other children (one school age, one preschool age), main treatment being at a hospital some miles from home, serious financial restraints - all this together with the understandable disbelief of the situation they and their previously very healthy daughter were now in.
Initially, my support was to co-ordinate my visits between hospital and their home. Sophie’s dad was resident at hospital with Sophie for many weeks but it was important for the family to have opportunities to be together as much as possible and also for the parents to have ‘time out’ together. During this period I spent time getting to know Sophie and her siblings - giving them individual attention with games, crafts and activities or just watching DVDs together.
It was then planned for Sophie to have major surgery to remove part of her hip and thigh bone, at another hospital even further away, so I remained with Sophie at hospital on the day her parents travelled to London for an in depth pre-surgery consultation, maintaining telephone support with the parents throughout the day.
Since Sophie’s diagnosis it became clear that the family’s accommodation was totally unsuitable for her needs, her father had to carry her up a flight of stairs to their council flat and once inside, space was limited and would not be suitable for wheelchair access. This situation became more urgent once the date of surgery was known and my support was given by liaising with the Occupational Therapist to encourage to ‘keep things moving’.
During the time that Sophie was in London for her surgery the family were allocated suitable accommodation, Dad returned home and it was my privilege to take him to the new address to start preparations for the relocation.
By this stage I had been supporting the family for two months.
Sophie’s intensive treatment was continuous between her local hospital and the specialist oncology ward for the next four months and the strain of the family being split (mum remained resident in hospital with Sophie) was taking its toll on them all.
My support during this period was varied, depending on the priority needs of family members at any one time, for example:
Sophie - for company, chats and activities;
About two months later, Sophie’s parents were given the devastating news that her cancer was spreading in spite of the chemotherapy treatment and there may be the possibility of more surgery. Extra emotional support was necessary at this stage and it later followed that I upheld the parents’ wishes for Sophie to continue as normal life for a child of her age as possible; so in the following months I spent quality time with Sophie and her siblings on outings, art and games activities including taking family on a couple of trips to animal shelters as they had promised Sophie a dog on completion of her chemotherapy!
As Sophie was attending school part time and her brother was also a pupil at the same school, support to the staff was given by close liaison and joint meetings (including parents and multi disciplinary staff) to ensure maintaining a consistent way of handling the situation and avoiding inappropriate information being shared with the close local community.
After about three months of keeping life as normal as possible the parents were then informed that there were no other treatment options and that there was only a short prognosis of time. Again emotional support was increased particularly at this time as the parents experienced mixed feelings of shock, disbelief, anger, failure, fear and hopelessness and were in need of much reassurance and encouragement.
I worked alongside the family, helping - by listening to their thoughts/feelings, acknowledging their fluctuating emotions and in particular one poignant shopping trip was with Sophie’s parents and grandmother when we were looking for Christmas decorations, the parents having realised this would be Sophie’s last Christmas and they naturally wanted to make it extra special not only for Sophie but for their memories too.
It was three weeks after Christmas that one morning I received a phone call from the school (the result of close liaison) advising me that the family wanted my help as Sophie had been admitted as an emergency to hospital after collapsing at school just an hour earlier. I was able to initially speak to Sophie’s siblings in that phone call to give them reassurance and tell them I would see them later in the day.
I then made contact with the family and confirmed care provision for the siblings and arranged to meet Sophie’s parents at the hospital.
Due to Sophie’s sudden deterioration my support changed to ‘end of life care’ and arrangements were hastily made with the hospital at the parents request to return Sophie home where she could remain with her family.
Sophie’s father and I went on ahead to prepare and bring Sophie’s bed down to the living room and collect the siblings from a relative. This was all completed in time for Sophie’s return by ambulance. As she was on high medication and very very sleepy I prepared the siblings on how she would be and encouraged them to still speak to her as they would normally – Sophie’s parents also appreciated knowing this as they were afraid, shocked and unaware of what to expect.
I remained with the family until late and offering to support them overnight but as they became more in control of the situation I left arranging to contact them in the morning.
This contact came much sooner however and was made by Sophie’s father through Rainbow Trust’s 24-hour telephone service to inform me that Sophie had passed away. When I returned the call he was naturally very upset and shocked and told me that Sophie had died about an hour previously and he did not know what to do or what to tell the children, I responded by encouraging him to ensure the family have this precious time with Sophie, no need to rush anything and I would visit straight away to help them.
That day I remained with the family all day and the support given covered a full range of emotional and practical issues:
At the family’s request and based on their needs my support over the following ten days involved daily visits and included helping with registering the death and close liaison with the funeral director on behalf of the family. I also accompanied the family during a visit to see Sophie in the Chapel of Rest and prepared the siblings about what to expect at the funeral and attend the funeral.
Support then continued as bereavement support, beginning with regular weekly visits encouraging the parents to:
Visits were then given fortnightly and practical issues were addressed, in particular the financial difficulties then being faced due to a large reduction in benefits and debts from the extra expenditure incurred giving Sophie a good Christmas. With the parent’s permission I liaised with a Community CAB worker who then frequently visited the family and negotiated on their behalf which has led to some feeling of stability for the parents.
Support has continued with intermittent visits and phone calls especially when Sophie’s birthday anniversary approached some three months after her death and arrangements were made then to mark the occasion.
Bereavement support will continue with visits as necessary, both for the parents and the siblings, together with telephone calls and in particular support will especially be given at Christmas and the anniversary of Sophie’s death
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