Support Families Who Have a Terminally Ill Child

Thank you for enabling Rainbow Trust Family Support Workers like Natalie to help and support families like mine.

Natalie is there for all of us and knowing that helps enormously when you have a child with such complex needs as Tlisa has.

Following an emergency caesarean section my new-born daughter, Tlisa, required resuscitation because she was not breathing.

Due to complications with Tlisa’s health we remained in hospital for two years, until recently.

Our lives drastically changed. Nothing is the same anymore. I have gone from being a mum to my eldest daughter, to a full-time nurse and carer for my youngest. I have lived in a hospital room for two years since the day Tlisa was born. In some ways, we have been completely dependent on other people and machinery.

I have to take one day at a time, facing whatever each day it throws at us.

Tlisa’s medical needs have also affected Faith. She had to give up all her things and move in with my parents.

Our family was ripped in different directions. We were lucky to see each other twice a month. My parents’ life also changed drastically. They went from being grandparents to full time guardians of Faith, doing school runs, bath and bedtimes, and all the parental responsibilities that come with looking after a child.

At this time, it was so comforting and reassuring to have Family Support Worker Natalie call in to see me in hospital, checking if I needed anything or to go out for some fresh air and a change of scenery. I needed this emotional support. It is like having that professional friend that you can always call on. Nothing is too big or too small.

Natalie has been helping with a range of things: application forms to secure equipment that Tlisa needed after her discharge, driving me to view our new home, packing ready for the move, and being on hand if my mum needs support with Faith.

There are so many families like mine, trying to cope, trying to keep going alone. Please support Rainbow Trust by donating today.

Roseanne

Mum to Tlisa and Faith

PS I was stressed, confused and alone; isolated from family and friends, but Natalie helps us practically and emotionally. She is always willing to go the extra mile to support us in any way we may need

Links:

• https://www.rainbowtrust.org.uk/

One morning in February 2021 five-year-old Kahmari woke up unable to move his arms. He was in a lot of pain so his mum, Krystal, took him to the doctor, who prescribed painkillers. The next day Kahmari was worse. Krystal was very worried so took him back to the doctor who referred him to the local children’s hospital.

This appointment was not until the following week and by the weekend Kahmari was feeling so unwell that Krystal decided to take him to emergency. After several tests, the doctors gave Krystal the devastating news that Kahmari had Acute Lymphoblastic Leukaemia. Krystal said: “I could really not comprehend what was happening. I couldn’t believe what I was hearing. I felt really upset, I was angry, I was so very sad”.

Kahmari was in hospital for two weeks. His first course of chemotherapy treatment and steroids was for six weeks; this treatment made him feel very ill and he was very upset.

Krystal is a single parent and she doesn’t have a wide network of support. This scary situation was making her feel isolated and very tired and stressed, coping alone with the pressure and worry of Kahmari’s diagnosis.

Kahmari was referred to Rainbow Trust and the initial assessment with Family Support Worker Wendy was completed over the phone due to the ongoing restrictions of the pandemic at the time.

In March 2021 Wendy started to support them at the hospital. Wendy worked on building a bond with Kahmari to eventually allow much-needed respite for Krystal. Kahmari found it hard to pronounce Wendy’s name so she took the new name of ‘Wenshy’.

Krystal said: “Kahmari would ask everyone at the hospital if Wenshy was there, he would call out Wendy’s name to any lady with brown hair and I had to count down the days until he next saw her”.

In April 2021 Wendy started supporting the family at home too. Wendy takes Kahmari to the park to ride his bike and play football, or they do art and crafts. But what Kahmari likes most is when Wendy helps him reach the next level on his Nintendo game. This fun time with Wendy provides respite to Kahmari’s mum and also an outlet and emotional support for him, as he navigates and understands what it means to go through treatment and live with cancer.

On top of the challenge of dealing with her son’s serious condition, and to make things worse, Krystal lost her job due to being in hospital all the time with Kahmari. Like many people in this situation Krystal is anxious about money. Wendy provides emotional support to Krystal and also helps by signposting her to information and financial benefits to which she might be entitled.

Although Kahmari’s treatment will not finish for another two years, Krystal is feeling much more positive and has started an Occupational Therapy course at university. Wendy will continue to support the family until they feel able to cope on their own.

Krystal said: “I just want to say thank you to Wendy for putting in the extra effort during this difficult time in our lives. Just having Wendy around playing with Kahmari and keeping him entertained whilst I have a break has really helped. I couldn’t imagine life without her. Her positive attitude has helped us to continue to feel motivated”.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for your wonderful support.

Links:

• What seriously ill children would do if they had a magic wand
• Sponsor a Family Support Worker like Wendy

Family Support Worker Jayne gives us an insight into some of the families she supports

I started working for Rainbow Trust in September 2007. The families I support are all very different: they have different needs, the ill children’s conditions are varied, the families’ situations are diverse and living with childhood illness and the trauma and stress this may cause manifests in many contrasting ways.

We listen and help practically without judging. We are there when families who are going through immense pressures and difficulties need us the most.

Noah is four years old with a heart condition and complex needs. Noah has just had major surgery which will hopefully see him into adulthood.

Noah’s mum, Clara, has some family support and I mainly provide face to face emotional support, two hours every week. It is very stressful and isolating to have a child with such complex needs. Emotional support is mainly about listening rather than giving my opinions. I am a sounding board and can suggest techniques to cope with difficult situations, manage negative emotions and I can offer potential solutions that may help in some instances. Sometimes a cup of coffee or getting out of the house with somebody like me could be just what is needed to help keep everything together.

We also talk on the phone twice a week, usually for about half an hour, to discuss anything that may be worrying her, and I go to some hospital appointments with them.

Daniel very sadly died four years ago. He was 12 years old and I had been supporting the family since 2016, following his diagnosis of cancer. They needed practical and emotional support.

I used to go to the house and spend time with Sandra giving her emotional support and helping with household chores whilst Daniel went to hospital for treatment.

Six months after the funeral Sandra told me that she would like to have a stone and plaque for Daniel’s grave. Her husband, Ryan, found this very difficult to cope with so I went with Sandra to the stonemasons to organise the delivery and unveiling.

I now pick Sandra up from home every month and take her to the cemetery to tend the grave. We used to do this every week but this is less frequent now that she is better able to cope. Sandra gets a lot of comfort from these visits. While we tend the grave we talk about her feelings, her grief and about when Daniel was alive.

I have been supporting Caitlin’s family since March. Caitlin is 10 years old and is being treated for a severe heart condition.

Caitlin and her mum, Andrea, had a whole day of appointments at hospital, involving lots of tests, meetings and check-ups to see if she is eligible for a heart transplant.

I drove them to this appointment, leaving home at 5am to pick them up at 6am. Whilst I drove, I listened to Andrea, who was very concerned about what was going to happen at the appointment. We arrived 20 minutes early which allowed me to show her around and try to make her feel more at ease.

Caitlin is scared about what’s going to happen, she knows her heart is not working well. Andrea is very upset because she may not be able to have a transplant. They both need support to be able to cope with this very traumatic situation.

Some days are very rewarding: a family may have positive news, or I can see that my help is really making a difference. It may even be that a family doesn’t need me anymore, which is always lovely because it means that they are doing well and able to cope. But some days can be very challenging. I am a keen gardener and my garden is my sanctuary; gardening is my coping mechanism. We are also provided with specialist supervision from a professional external counsellor once a month or more often if needed.

We also have supervision with our manager once a month and once a week we have a team meeting, where we have the chance to share and support other team members. Being a Rainbow Trust Family Support Worker is a wonderful and very rewarding job.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for your wonderful support.

Links:

• Sponsor a Family Support Worker like Jayne

During a pre-eclampsia examination at 28 weeks, when Danielle was pregnant with her second child James, the doctors discovered that the baby’s heart beat kept dropping to a dangerous level, unable to bring it back up. Danielle had to be induced and James was born 12 weeks prematurely.

James was in hospital for the first four months of his life. When he was discharged, he needed home oxygen treatment and to be fed through a tube as his breathing is compromised due to suffering chronic lung disease.

Since birth James has had complex needs and requires looking after 24 hours a day. James is nonverbal, has low muscle tone and is unable to eat or drink anything. Nothing prepares a parent for this. Danielle says: “The world stopped when James was born as we weren’t expecting a child with such complex needs. He weighed just 1lb 4oz. James had a bleed on his brain at three days old which has caused cerebral palsy, developmental delay, visual impairment, hydrocephalous and many other conditions.”

Danielle and her husband Chris have now been receiving support from Family Support Worker Ema for nearly three years. Ema’s support was originally mainly for James and his now nine-year-old sister Bella, who found it hard with James being in and out of hospital. Ema has been helping them to have fun despite the day-to-day difficulties they face. These play sessions also provide an opportunity to give emotional support to both children. For Bella monthly one-to-one sessions give her focused “me” time. These sessions have boosted both children’s confidence and social skills.

Ema also provides much needed emotional support for Danielle at home and over the phone, focusing on helping Danielle to have more confidence in general and specifically around looking after James and to allow herself more time to heal emotionally.

Over the last three years, James has been in and out of hospital. This, together with the numerous medical appointments, presents many challenges for the whole family. As the family waits for a mobility vehicle Ema provides transport so they don’t have to worry about booking and paying for taxis, traffic jams and delays and can just focus on James.

At the end of 2021 James started passing out, losing control of his limbs and body due to a cyst on his brain. The cyst was causing a blockage and fluid was accumulating, increasing pressure in his brain.

Because of this, James recently had to undergo two brain surgeries.

Danielle says: “Rainbow Trust makes you realise that you’re not alone and that there are many other families who are in the same situation. The Family Support Workers can guide you to a more positive outcome in your life.

“Ema has gone above and beyond to help us. Ema is our own Nanny McPhee!“

Family Support Workers like Ema help families with a life-threatened child practically and emotionally.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for all you do to enable this.

Links:

• https://www.rainbowtrust.org.uk/about/familystories/james-story
• https://www.rainbowtrust.org.uk/

Family Support Worker Brodie helps Amy and her family whilst Henry is on the neonatal ward and at home

Amy was referred to Rainbow Trust in January 2020 by the neonatal team at Burnley Hospital, while her son Henry, then four months old, was an inpatient, awaiting open-heart surgery.

During the pregnancy Henry was diagnosed with Down’s syndrome, as well as a heart condition called atrioventricular septal defect and cardiac failure. All this was very worrying for Amy and she wasn’t sure how she would cope with it.

When Amy started receiving support from Family Support Worker Brodie, she was staying at Parent’s Accommodation near the hospital with her other son, George, who was two years old.

Being at Henry’s side and caring for George was very difficult and immensely demanding. Amy felt very alone, isolated and she was struggling to cope.

Brodie supported the family at the hospital. She would sit with Amy at Henry’s bedside offering emotional support, someone to talk to. She would take George out to play so Amy could spend time with Henry without worrying about entertaining and looking after George. Brodie would also sit with Henry so Amy could go and spend quality time with George.

This support meant Amy did not feel guilty about spending time with one of the boys and not the other; she knew each week that she would have that time, as well as someone to talk to. Amy really welcomed this help because it made her feel less isolated and gave her respite from looking after and worrying about both boys.

When the pandemic hit in March 2020, visitors were no longer allowed in the hospital due to COVID-19 restrictions. Unfortunately, this coincided with Henry’s open-heart surgery.

Whilst Brodie was unable to go into the hospital, she continued giving Amy support. They would regularly speak on the phone, giving Amy that constant emotional support, someone to talk to, to discuss her concerns. Brodie was able to give her advice and reassure her when she needed it the most.

After a couple more months in hospital Henry was improving and the consultants discharged him. This was wonderful news for Amy: she was finally able to leave the Parent’s Accommodation near the hospital and go home with her boys.

In November 2020 Amy felt that she no longer needed Brodie’s support and they agreed to stop. Amy continued to get in touch with Brodie every so often when she needed advice. She said, “I’ve always felt that Rainbow Trust’s help was the only support I could turn to. Family Support Worker Brodie was always happy to help.”

Things changed in May 2021, when Henry was admitted to Blackburn Hospital with serious breathing and chest problems. He now requires oxygen 24 hours a day. Knowing where to get the support she needed, Amy immediately contacted Rainbow Trust and Brodie started helping them again as they were struggling with many of the same issues as before.

Due to ongoing restrictions, visitors were not allowed on the ward, except for medical or social care professionals, and Amy was again feeling isolated. This time she wasn’t even able to see her eldest son, George.

Thankfully, as a professional, Brodie was able to give respite care on the ward and sit with Henry while Amy had a break and spent time with George. Brodie has also stayed with Henry to enable Amy to go home and get the house ready for their return.

Now that the family are back at home Henry still needs oxygen 24 hours a day. Brodie continues to support Amy’s family, giving her respite and emotional support until Henry recovers.

Amy told us: “Having Brodie by my side has been transforming and such a relief. I don’t know how I would’ve coped all alone." 

Thank you for your support.

Links:

• Watch a short video about Rainbow Trust's impact