Support families who have a terminally ill child

 
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Karen: “Without Rainbow Trust this family would have fallen apart.”

Jonathan Allen, 16, Karen, Pippa, 18, Holly, 14, Marcus, 11

When 16 year old Jonathan noticed pains down his left side, he thought they were muscular but when they got worse, his mum took him to the doctor. Sadly, keen karate fan Jonathan, was diagnosed with bone cancer.

He started chemotherapy on 10 March 2013.

Jonathan

“It was only a week before I was diagnosed but every time I stretched I was in pain. I mentioned it to my mum and took some painkillers but when it didn’t improve we went to the doctors and I was referred for an emergency MRI. I had to have an operation to remove the tumour, which was tricky as it was behind my ribs, but they managed to remove the tumour and I started chemo straight away.”

Jonathan, who is studying xxx at college, managed to keep up with his studies throughout his treatment aside from a couple of days off when he was at his worst. He’s continuing his course and hopes to be a veterinary nurse or lead talks about the animals that he deals with.

“The doctors told me to take it easy after my treatment and I have been, to an extent, but I don’t want to miss out on what my friends are doing. I’m hoping to get back to some karate training soon too.”

Karen, Mum

“Initially I just gave Jonathan some painkillers and thought nothing of it but it became clear there was something else going on so we took him to the doctors and were referred for an MRI scan. It was a bolt out of the blue when he found out he had cancer and I wasn’t sure how I would cope as a single mum. I’ve got Jonathan’s older sister, Pippa, 18, who is a massive help but has her own life as well as the two younger ones, Holly, 14 and Marcus, 11. Initially when I said I would struggle I was told that Pippa would have to leave college and become a ‘second mum’ to the kids, which I was not happy about. I was also told that another option was to put the younger kids into foster care, which I was determined would not happen.”

“Rainbow Trust and our Family Support Workers Pete and Jade, saved us when we heard about them in September 2013. Without them, Jonathan would have lost his college place, Pippa might have had to leave college and we would have been struggling with the three hour round trip to Addenbrookes while looking after the younger kids. I can’t explain the difference that Rainbow Trust has made to us.”

“It’s little things. Like last week Jade took Pippa and Holly to Lakeside and they all went shopping. It meant that they had a day which was just about them, which is so important when we have all had to focus on Jonathan. Jade also has an amazing relationship with Jonathan and we all trust her. He’s happy in her company, as am I and the other kids, and her support has allowed us to get on with our lives throughout Jonathan’s diagnosis and treatment. I’ve told lots of people about the amazing work Rainbow Trust does. Without them this family would have fallen apart.”

Pippa, Sister

“Having Jade has really helped eased the tension between me and mum, she’s been a lifesaver. We’re both very strong willed and it’s been a hard time but Jade makes sure that we both have someone to talk to. Going to Lakeside was brilliant and something we wouldn’t have had time to do without Jade. Without Rainbow Trust, mum and I would have been at each other’s throats but Jade has helped us work through difficulties and have time to ourselves.”

Your donations have helped us to create new posts for specialist neo natal family support workers.

Please take a few minutes to watch the short film on this link to see how important your donations are to us.

http://rainbowtrust.org.uk/our-impact/serving-families/new-neonatal-family-support-initiative

 

When Charlotte, a single mum of one, discovered she was pregnant, she was so excited and happy but a pre natal scan showed that, tragically, her baby had a heart defect and was not expected to survive birth.

The hospital contacted Rainbow Trust and asked us to support Charlotte at her baby’s birth, to take care of them both and her baby’s end-of-life care. They also asked us to help Charlotte to look after Alfie, her two-year-old son.

When Bryan, our Family Support Worker in Swindon, called Charlotte he discovered she was already in labour. She asked for his support and he went straight to the hospital. She asked him loads of questions and talked about death, dying and funerals – she was very open about it all. Bryan stayed with her and supported her throughout her labour and her baby boy, Charlie, was born without any intervention.

For a 21 year old, the birth of her baby and his imminent death left her reeling between feelings of excitement, relief, fear and grief. Charlotte hoped that he was all right - he looked ‘perfect’, with no signs of being ill. Bryan stayed with her until she settled and agreed to return in the morning.

Sadly, a scan confirmed baby Charlie’s condition and prognosis. Charlotte was very upset and wanted to be with Charlie at the hospice. While she was there, Bryan spent time with Alfie and took him to visit her. He listened to Charlotte as she talked about baby Charlie’s impending death, and together they made funeral plans.

While at the hospice, Charlotte wanted to take Charlie home to “see his home”, the bedroom she had prepared and for them to have some time like a ‘normal family’. Bryan and a hospice nurse accompanied Charlotte and her boys home. This time was very precious to Charlotte. She felt she could pretend that everything was normal.

Charlie lived for 19 days. After he died, Charlotte struggled to come to terms with his death and relied on Bryan greatly for emotional support during the week leading up to Charlie’s funeral.

Bryan continues to support Charlotte and Alfie. He takes them to the cemetery and also encourages Charlotte to visit Rainbow Trust’s local drop-in group for additional support.

 

Bryan supported Charlotte through the most difficult time of her life. He will be there for her as long as she needs him.

McKenzie
McKenzie's Family

In August 2011, two year old McKenzie fell off a chair and did what most boys do, he cried for a minute, then carried on playing. When his mum, Amberley, went to change his nappy, he let out a “high pitched scream in agony,” but she didn’t know why. She watched him over the course of the day and noticed he had a stiff neck which she assumed was from the fall. Amberley and her husband John, took him to Lymington Casualty where doctors suspected that he had meningitis. They were rushed up to the General Ward where they were told he had tonsilitis and could go home.

 Weeks later, McKenzie was still not right and after numerous visits back to the hospital, Amberley noticed that he couldn’t turn his head and had a pea sized lump on the side of his neck. In October of that year, she took him back to the Paediatric Centre who, once again, told her it was nothing. Amberley refused to leave until someone examined him. An ultrasound scan and biopsy revealed that he had abnormal lymph nodes and Stage 4 Neuroblastoma.

 The tumours in his neck had started crushing his airways so McKenzie was put into a coma for four days to save his airways from collapsing. He underwent chemotherapy until the end of March and was kept in hospital for eleven long months.

 McKenzie was diagnosed with atypical HUS, a disease that destroys red blood cells and causes kidney failure in children. He underwent six months of chemotherapy, then surgery, then radiotherapy which involved a general anaesthetic daily for three weeks. The chemotherapy had to be stopped as his body had begun to shut down, “If we’d given him one more dose of chemotherapy, we’d have killed him,” says mum. In the September of that year, McKenzie started treatment in the form of an IV infusion drip which he had to have every two weeks in hospital. The drug protects his kidneys by slowing their deterioration but the family are aware that he will need a transplant when he’s older.

 McKenzie is the only person in the world who has this condition - most people who suffer from HUS recover but McKenzie won’t. “We take every day as it comes, we wake up in the morning and today’s a good day. We’re very lucky, a lot of McKenzie’s friends on the ward have passed away. We’re lucky to have made it this far, we just don’t know what tomorrow will bring. Today’s a good day.” For a family which has been through so much heartache and difficulty, they are exceptionally positive and see each day as a blessing. Amberley remembers the day when McKenzie was first diagnosed and given a 40% chance of survival and another mother on the ward said, “‘40%? That’s amazing!’ “I looked at her and thought, you’re right, even 1%, you have to cling to it!”

 CLIC Sargent recommended Rainbow Trust to Amberley and John but they didn’t feel that services like taking children to and from school was something they wanted. A while later they met Rainbow Trust’s Southampton Family Support Worker Dawn in the playroom at the hospital. She asked them what kind of help she could provide and Amberley told her she’d like someone to play with her children and, “bring some fun back into their lives,” since they’d lost that with McKenzie being so ill. Dawn visited the family’s home and played with the children who immediately ‘clicked’ with her. “They all just love her, don’t’ they?” Amberley says to John.

 The time Dawn spends with the children allows Amberley to do the shopping without having to drag all five children along. If McKenzie is in hospital, she can ask Dawn to help out with the other children.

“One day when Dawn came, she told John and me to go and have a meal, just us two, we never get to do that,” remembers Amberley fondly.

 As well as playing with the children, Dawn provides the family with emotional support, “If one of the older girls is struggling emotionally, I call Dawn to come and have a chat with her.” She has been very supportive throughout McKenzie’s illness and helps the family stay optimistic.

 McKenzie is unaware of the enormity of what he has been through and accepts his life for what it is and makes the most of it, “He’s the only child I know who rides his drip like a skateboard,” laughs his mum.

 He recently underwent some tests which revealed that his bladder is the size of a walnut so can only hold 40ml, “…so he’s been wetting himself for the past two years and people think he’s lazy or just hasn’t cottoned on, but he’s had this problem.” Doctors don’t know if his bladder was damaged during treatment. McKenzie also has Horner’s Syndrome which means he has one pupil much larger than the other, a droopy eyelid and reduced sweat on one side of his body, “when he’s been running around, he has a half red face and half his hair’s wet,” tells mum.

 As McKenzie gets older, cosmetically, the damage of the treatment and his illness will become more apparent. Despite all of this, he looks like a typical happy five year old playing with his siblings. He won’t be able to play certain sports like other boys his age but his parents encourage him in every way they can. “He came home from school with a note about a Construction Club and when I told him he could do it, he said, “Yes! I got one!” and then ran around the office the next day telling the staff he could finally join a club.” His enthusiasm to embrace life is obvious and, despite being a very poorly little boy, he still manages to face each day with a smile on his face.

 Older sisters, Memphis and Missy, wanted to give, “something back to the other sick children,” so have been fundraising for Rainbow Trust in a number of different ways. They have organised a non-school uniform day at their school where children went to school in rainbow colours and they’ve organised a cake sale in aid of Rainbow Trust. Their latest idea is a Big Tea Time for Rainbow Trust in line with The Big Hour campaign. On 22 October, the family’s local pub has agreed to let them run a fun day with a raffle, games, cake sale and refreshments, all in aid of Rainbow Trust. The girls have been given the day off from school to be a part of their great idea and hope to raise as much money as possible. “…the biggest support [for us] has come from Rainbow Trust and we are going to try our hardest and anything will be a bonus, won’t it?” says Amberley.

 Dawn continues to support the family providing whatever they might need. Her time is precious to them as they continue to juggle life with five children and hospital visits, while maintaining a positive environment for them all.

Thanks to your generosity, Rainbow Trust Children's Charity were able to provide the following in 2013.

Family Support

1,368 Families supported around the Country.

Transport Support

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 !

Sibling Support

3,273 hours of Sibling Support, mainaining school attendance, arts & crafts, cinema trips, days out at the zoo, fun and laughter.

Home Support

10,749 hours of home support, including emotional support, respite, countless meals cooked, baths run and story books read.

Hospital Support

6,804 hours of helping to organise appointments, explaining illnesses and treatment, looking after siblings and staying with sick children.

Bereavement Support

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;
  • siblings - visits to Sophie, voicing concerns/anxieties and fun outings;
  • parents -  respite, both  individually and as a couple, emotional support, transport, shopping, advocacy support at meetings with consultant;
  • grandparents –  emotional support;
  • medical and ancillary staff – liaison on behalf of family.

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.

L-R:  Siblings Ben, Emily with Sophie taken a month before she died

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:

  • preparation and explanations to the siblings at each stage throughout the day;
  • emotional support for parents and grandparents;
  • information and guidance on procedures;
  • phone calls on behalf of family;
  • liaison and arrangements with funeral director;
  • liaison and guidance – at their request – with the school, with suggestions on how to inform the pupils;
  • shopping for basics;
  • booking appointment to register the death.

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:

  • to reflect and share memories of Sophie;
  • to acknowledge the effect of the pressure/stresses of the past 18months;
  • to give reassurance of ‘normality’ of their various behaviours/feelings;
  • to give time to the siblings and check on any underlying worries/questions and give them the opportunity to talk about Sophie;
  • to consider memory box items and keepsakes for each member of the family.

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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Organization

Project Leader

Dave Pearson

Leatherhead, Surrey United Kingdom

Where is this project located?

Map of Support families who have a terminally ill child