Support families who have a terminally ill child

 
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Oct 14, 2014

McKenzie's Story

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.

Feb 11, 2014

How your donations helped in 2013

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.

Sep 3, 2013

An Example of a Family Support Workers Role

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

Jun 13, 2013

News from a Rainbow Trust Supported Family

I always think it is good for our supporters to hear from Families that we support, so here are a few words from David Bara.

I’m a dad and my little girl Adi,has cancer. Sharing my story with you today is my way of publicly thanking Rainbow Trust for all their support and to show how vital your donations are in helping dads like me cope.

Adi is only two years old but is very aware that something strange is happening to her body. Her brain tumour was aggressive and, even though all but a tiny piece had been removed, they could still only give her a 35-50 percent chance of surviving the next five years.

The nights apart are horrendous
My wife spent every night with Adi whilst she was in hospital and I was at home trying to keep a sense of normality for our son Asher. Searching to find soothing answers to his questions about where his mummy and sister had gone.

Struggling to cope with Adi’s cancer
The hospital appointments, operations, tests and waiting become your reality, your every day life. It is exhausting but I must make Adi as happy as possible so she is in the best psychological state to fight the cancer. Sometimes I am so tired it is a strain to keep smiling. Alison, our Family Support Worker helps with this a lot. She spends fun hours with Adi; they paint, read stories together and laugh a lot. She is there when we need her.

How you can make a difference
In all honesty, I have no idea what the year ahead will bring. It will be challenging, tiring and so much more. Thanks to Rainbow Trust we have a great team behind us no matter what. Rainbow Trust relies almost entirely on the generosity of voluntary donations from individuals like you to make sure that the service families like mine receive is available 24-hours a day, 365 days a year. I am overwhelmed by the professional care we have received. Rainbow Trust need to raise £10,000 to provide 500 hours of support for families at the hospital, at home and to worried siblings. Please help my family to say thank you and support other families in need.

David Bara

Mar 15, 2013

Family Support Workers

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.

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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