Phoebe's Story
Phoebe was just 14 months old she was admitted to hospital for various infections. When the consultant told her family that she had leukaemia, their whole world came crashing down.
Phoebe spent the next two months in the oncology ward, very ill. Her parents,Aimee and Nathan, also had a three-year-old son, Ollie, to take care of. Because of this, Nathan couldn’t go back to work after Phoebe's diagnosis. Whilst they tried to keep things as normal as possible for Ollie, a lot of time was spent separated as a family whilst eitherAimee or Nathan stayed in hospital with Phoebe.
Anurse on the ward referred the family to RainbowTrust and, soon after, RainbowTrust Family Support Worker,Amelia, started supporting them.Amelia provided sibling support to Ollie playing, looking after him and comforting him.Aimee said:
“It was such a weight off my shoulders knowing that she was looking after Ollie so that I could be with my sick child. Ollie lovedAmelia and she would collect him from school and take him home to play, bring him up to hospital so he didn’t have to be there too long but also so I could see him and give him a hug.”
Phoebe had chemotherapy every day for two and a half years and trying to split time between her and Ollie was really hard for their parents. Phoebe was in hospital for so long but with Amelia's support Ollie became a happier child, more confident and also more settled.Amelia not only gave him play time and fun but emotional support - she was there especially for him and this made a huge difference.
After nearly three years of gruelling treatment Phoebe recovered. But, just before Christmas last year, she relapsed.
This news was a hard blow to take after what Phoebe had gone through already. It felt so unjust and overwhelming. I was heartbroken.
This time, the family were told that Phoebe would need a bone marrow transplant.They were faced with a major medical procedure, the risk of side effects and the prospect of Phoebe being in isolation at the hospital for at least six weeks. Children are not allowed to visit during a bone marrow transplant, so Phoebe would be separated from her brothers - Ollie and her youngest brother, Myles - during this time. Aimee and Nathan had to make the hard decision of splitting themselves to care for their children: one parent with Phoebe in hospital, and one parent with Ollie and Myles.
Having had RainbowTrust support before, we knew immediately how much we needed their help. In fact, this time round we needed RainbowTrust more than ever before.
The support they had received before was mainly for Ollie, to help him in dealing with the difficult emotions and disruption of having a seriously ill sister. But, this time, Aimee knew that support would be needed more for Phoebe - so that she had some company in hospital - and forAimee to be able to have a break from Phoebe's bedside every so often.
RainbowTrust Family Support Worker, Charlotte, started visiting Phoebe regularly at home on the lead up to her bone marrow transplant – which was scheduled for last December - to get to know her. Charlotte and Phoebe played with playdough, watched music videos and played board games whilst also talking and sharing feelings and emotions.
But then, on 1 December, Phoebe became seriously unwell due to a virus and was admitted to intensive care. Phoebe was not able to talk or walk and slept for most of the days. Aimee said: “We were devastated and very frightened. Phoebe nearly went into a coma. She became almost partly brain damaged. Her brain shut down and she would just lie there and not communicate. We thought that we were going to lose her. For a while, the doctors could not work out what was happening and told us to prepare that Phoebe may not get better. ”
Charlotte was by my side. Instead of sitting by Phoebe’s bedside, Charlotte focussed on me and my emotional and physical wellbeing at this horrendous and very scary time. Charlotte helped me to cope with the uncertainty of it all.
Then, the day before Christmas Eve, Phoebe finally woke up.
We didn’t wake up on Christmas Day to do the things that I would’ve loved doing with my family. We didn’t have a special Christmas, all together as a family, at home.
I think the hardest part was for me, knowing that this is not the way it should be for a family at Christmas time.
Phoebe andAimee managed to get home for NewYear and spent a short while together with the rest of the family before heading back to hospital on 18 January to prepare for the bone marrow transplant.
Whilst isolating in hospital, Charlotte began visiting Phoebe twice a week to provide emotional support through play and allow her time to talk about her worries. During these visits Nathan andAimee would take the time to go outside, do some exercise, or take the rare opportunity to have lunch together. Charlotte enabled them to have time to talk to each other, to decompress and process what their family was going through.
Whilst Phoebe andAimee were in hospital away from their family for nearly six weeks for the bone marrow transplant, Charlotte also organised some days out for Ollie, to give him some respite and a chance to meet other children in his situation.
When COVID-19 hit, most people had an insight into what families like Phoebe's - living with childhood illness - face every day: uncertainty, isolation and fear. Phoebe and her family had spent six weeks in hospital, split as a family, and then faced the foreseeable future in isolation, shielding at home, due to the pandemic.
During the first lockdown, Charlotte adapted her support to Ollie, playing with him over Zoom to give him a bit of distraction and dedicated time. Myles also joined the Zoom calls - he would take over and enjoy some one-to-one time as well.
My heart filled with joy hearing Charlotte on Zoom calls with them, when they all laughed and seemed happy and unaware of what was going on, both with Phoebe’s illness and with lockdown and the pandemic.
After coming home in March, Phoebe became really ill again and ended up in intensive care.And, unfortunately, the same happened this September. The reality is that, since September 2019, Phoebe andAimee have been at home - and not in hospital - for only eight weeks. Cancer does not stop for Coronavirus.
Throughout all this time, Charlotte has provided bespoke emotional and practical support, also innovating and adapting amidst a global pandemic.
Henry’s Story
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 forAmy and she wasn’t sure how she would cope with it.
WhenAmy started receiving support from Family Support Worker Brodie, she was staying at Parent’sAccommodation 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 withAmy at Henry’s bedside offering emotional support, someone to talk to. She would take George out to play soAmy could spend time with Henry without worrying about entertaining and looking after George. Brodie would also sit with Henry soAmy could go and spend quality time with George.
This support meantAmy 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 givingAmy support.They would regularly speak on the phone, givingAmy 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 forAmy: she was finally able to leave the Parent’sAccommodation near the hospital and go home with her boys.
In November 2020Amy 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 RainbowTrust’s help was the only support I could turn to. Family Support Worker Brodie was always happy to help.”
Things changed in May this year, 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 RainbowTrust 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, andAmy 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 whileAmy had a break and spent time with George. Brodie has also stayed with Henry to enableAmy 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 supportAmy’s family, giving her respite and emotional support until Henry recovers.
Maddison’s Story
Merissa, RainbowTrust Family Support Worker started supporting the McVety family in 2019 after Maddison was diagnosed with cancer at age 13. She was diagnosed with osteosarcoma (a rare form of bone cancer) in her leg and following surgery to remove it in 2019, had chemotherapy treatment. Merissa provided the family with support for some of the other younger siblings, which included trips out and entertaining at home with crafts and games.
Merissa stopped supporting the family in 2020 as Maddison recovered well and the family felt that they could manage again. In 2021 Maddison had a relapse and the community nurse contacted RainbowTrust to support the family whilst they navigated the next stages of her treatment which included further chemotherapy. On this occasion Merissa dedicated much of her support to one sibling in particular, and due to how busy it was at home, accompanied them to school to provide support sessions.This included pre-bereavement support when it was known that she would not recover. Support continued after Maddison died, with sessions focussing on helping to keep her memory alive and Merissa helped to ensure bereavement support plans were put in place at school for both the younger and older siblings. Maddison's Story
Maddison died on 26thApril 2022 after a battle with cancer at the of age 16.
Maddison was a wonderful, bright, funny young girl who was good at everything she did, especially football, she was one of the top players in her team. She was also a big Manchester city fan. She was very academic and attended Urmston Grammar School from year 8 to year 11 and achieved 5A* and 2Ain her GCSE’s. It was during year 11 that she became too ill to attend school.
Maddison’s dad, Kevin McVety says;
“She was so brave and showed strength and resilience beyond her years. When she broke her ankle on a slip and slide at school she made no fuss at all, saying she had been through much worse with her first round of cancer treatment, even though she needed an operation to have pins put in. She even planned her own funeral, sending out her own funeral invites. She wanted everyone to be there and for it be a wonderful celebration of her life, which it was, full of laughter and tears. We played a video of her singing along to a Stormzy song that she’d recorded the day after we found out she had relapsed, her cancer had returned in both lungs.”
Coping with bereavement
Dad Kevin McVety
continues;
“After Maddison died we lost contact with so many people.They didn’t know what to do and what to say to us. During a visit to relatives the Christmas after she died, Maddison’s grandfather said ‘Don't be sad she wouldn’t want that’. But we need to be sad, we need to talk about her, share our feelings which is very hard and we need to do that in our own time."
"When we went to the shops we would see people we know and they would avoid us, scurrying up another aisle of the shops to avoid us, to avoid talking to us, I don’t think they knew what to say or what to do. In some ways it’s a relief to not have to speak to them, but then you have to build yourself up to go out and face the world, so it does knock your confidence."
"When she was dying in hospital all the nurses said to us don’t worry when the time comes you won't be alone, but we were.The trauma of losing her will never leave us, I can still hear my wife scream when she died. For us RainbowTrust, and Merissa our RainbowTrust Family Support Worker, provided the support we needed at a time when we felt alone and abandoned."
"The whole family felt the warmth of RainbowTrust’s care – I cannot emphasize enough how amazing it was to have someone come to the house and ask how they could practically help you. Merissa took the other younger children for a walk or to the park, she helped them to talk about their feelings – she even went into school to provide one to one support sessions.And she took time to chat with my wife, which was such a huge support for her. RainbowTrust are still helping us today and we are so grateful their support will continue for as long as we need it.”
Kevin says “You are never prepared for your child’s death and it’s too much to deal with alone. We need to spread the message that educating people about bereavement is important. There is never the right thing to say but we need to say something. Kevin’s advice is talk about your feelings, don’t let it build up, get out of the house as much as you can, don’t be afraid to ask for help and look after your family.“
Kevin still gets his Facebook memories pop up and they make him sad and happy but he could talk about her all day long.
Bella and Ruby’s Story
Ella-Mae and fiancé Giovanni’s non-identical twins, Bella and Ruby, were born 14 weeks early weighing a mere 910 grams and 900 grams respectively.
At her 20-week scan, Ella-Mae was told to prepare to lose the babies as she had already started dilating. With medical intervention and almost seven weeks of bed rest, against the odds, the girls survived and were born on 31 October 2018.
Due to their prematurity, the girls had Chronic Lung Disease and needed 24-hour oxygen.They were kept in hospital on the neonatal ward until mid-January 2019 during which time they, collectively, had 10 blood transfusions and had several serious complications. Once the twins were discharged, they required round the clock care and oxygen for another eight months.
Ella-Mae contacted RainbowTrust after reading about their support on the neonatal ward at Guys and StThomas’.After an assessment, Ella-Mae and Giovanni were assigned Fiona, their own dedicated Family Support Worker.
“Fiona gave us emotional support during the hardest time of our lives. We had no certainty the girls would make it, and this support made the world of difference to us.The magnitude of difficulty and the overwhelming roller coaster that comes with having two sick children is unimaginably hard. We are eternally grateful to RainbowTrust for helping us get through.”
Fiona provided Ella-Mae and Giovanni with emotional and practical support and helped the couple with moving the girls back home. She also took them to hospital appointments and helped with the girls’oxygen. Fiona also provided Ella-Mae and Giovanni with some much-needed respite.
“I couldn’t do it without Fiona and RainbowTrust. Having her visit for a couple of hours is like coming out of deep water and being able to breathe again. Having someone to talk to and who is good with the girls is amazing. She’s incredible,” says Ella-Mae.
“If you feel worried to ask for help you shouldn’t be. RainbowTrust has experience with various families and always made us feel that our voices were heard.They are the kindest people with the warmest hearts and we are eternally thankful for their support.”
“The support from RainbowTrust has made my journey easier and cushioned the blow at the hardest time of our lives.”
Fabian’s Story
When doctors found a tumour in her son’s liver, Marte found it difficult to cope. This is her story.
When Fabian, my son, was two and a half, he was seriously unwell but specialists and doctors told me he was completely fine. I knew he wasn’t.
When he stopped eating and was in pain I took him to our local hospital, where they couldn’t identify what was wrong with him and we were referred to Brighton Hospital. Within half an hour of being there we were told he had a big tumour on his liver. I didn’t know what to do or how I would cope.
He started his chemotherapy atThe Royal Marsden Hospital soon after.As the tumour was very big, doctors wanted to shrink it as much as they could before operating. When they did operate they had to remove part of his liver and chemotherapy continued for two months to try and ensure all of the tumour had gone. Unfortunately, Fabian’s hearing was damaged by the treatment and as a result, he now has hearing aids in both ears.
My husband had to take days off work to come to hospital but he couldn’t do this every time.Afriend referred me to RainbowTrust and our Family Support Worker, Jayne, started working with us shortly thereafter.
Jayne helps and supports us in many different ways. We couldn’t travel by train due to the risk of infection for Fabian so she helps by driving us to and from hospital.This is of huge help because it means one less thing to worry and stress about.There are always problems parking at the hospital so having Jayne there means I am not late or stressed when we arrive for treatment or to see consultants.The time in the car is good for me too: while Jayne drives we chat about my worries and concerns, about how this is affecting me - she gives me emotional support which I really need. All of our extended family is in Poland, so we don’t have much support around us. Jayne has been amazing, a constant presence with practical solutions and really helpful. She would always think about how she could help us and would offer advice if we need it. I was really lucky to find Rainbow Trust as I didn’t think there would be anyone to help families such as mine. We were on the edge. Everything was too much to cope with. It’s always so good to open the door to Jayne and her smiley face. She is literally the right person, in the right place, at the right time - she has helped us so much. Jayne is doing a very difficult job, helping parents and ill children; she is amazing and I am really grateful for all the incredible support she has given me over the past three years.
Jaxson’s Story
When Jaxson was just three years old he was diagnosed with leukaemia. He had been complaining that his legs were aching and painful but his parents, Sophie and Mitch, thought that maybe he had pulled something.
One evening, whilst staying at Sophie's mum’s, she called Sophie very worried as Jaxson had a nosebleed that wouldn’t stop. Later on, they noticed a lump on his neck and rang 111 who suspected it was mumps. Four days later, Jaxson was lethargic and his temperature reached 40 degrees.The doctor said it was tonsillitis but soon after he was referred to Bristol Children’s Hospital. Mitch wasn’t allowed in because this was at the height of the pandemic.
After some blood tests Sophie was taken to a room, away from Jaxson, to talk.The nurse was carrying a box of tissues and she knew it had to be something bad. Completely alone, in that sterile environment, Sophie found out the devastating news that Jaxson had leukaemia.
Jaxson endured many months of treatment, in and out of hospital, in-patient appointments and monthly lumbar punctures.The family spent Christmas and the new year in hospital and were still in and out of hospital, every month, for the next three years.
That first night I sat in the hospital room alone whilst Jaxson slept. I just cried and cried. I couldn’t sleep as I didn’t want to take my eyes off him.
Our lives were a mess. We were just surviving. Just trying to cope. It felt like Mitch and I were passing ships in the night as only one parent was allowed into the hospital. We would meet at the car, quickly exchange handover notes and be gone again. Sophie, Jaxson's mum
Sophie, Mitch, and Jaxson's younger sister Bella, all had to isolate due to Jaxson's treatment and were not able to see friends and family during this time. Bella was only 14 months when Jaxson was diagnosed, and Sophie explained the guilt she felt being away from her so much: "I feel I didn’t watch her growing up and I feel guilty about not being with her much. I missed bedside stories, so many cuddles and milestones, dinner together, going to the park."
Sophie and Mitch self-referred their family, and in January 2023 RainbowTrust Family Support
Worker Wendy began supporting them. Sophie says that "both Bella and Jaxson immediately loved Wendy, and loved having someone else to play with".
Wendy gave them respite and her support allowed Sophie some time out and a chance to do jobs she needed to, like prepare lunch boxes for next day, make dinner, take the dog for a needed long walk, and just to get a bit of ‘me time’. It also meant Sophie had someone to open up to, who understands their situation.
I had closed myself off but with Wendy I had someone to open up to. She has worked with other families in similar situations and understands how our lives are turned upside down.Talking to Wendy helps me cope better.
We are eternally grateful for having such amazing support from Family Support Worker Wendy. Sophie, Jaxson and Bella's mum
In February 2024 Jaxson rang the bell to mark the end of his cancer treatment.Although this was a huge milestone, Sophie explains that there always remains a worry about Jaxson's health: "We know this journey can change at any moment, and I still feel that now, a few months on, so we make sure every day is counted for.The fear is always there."
Lola’s Story
Jodie and Darren are parents to four-year-old Lola, and five-year-old twins, Isaac and Isla. In May 2022, Lola had a poorly tummy and complained of stomach pains – it was not long before Jodie noticed a lump on Lola’s tummy and took her to their local urgent care walk in centre. Lola was immediately sent for an ultrasound which showed a mass on her kidney, and she was then sent to Newcastle Royal Victoria Infirmary for a CTscan which confirmed the mass was a Wilms tumour.AWilms tumour is kind of kidney cancer.
Jodie explained how quickly Lola began treatment after her diagnosis:
‘Within two days of being confirmed with a WilmsTumour they sent Lola to theatre to have a catheter fitted.Then they started chemotherapy straight away, and then she went for surgery six weeks after the diagnosis to remove her left kidney.’
‘She had more chemo after that, and then in December Lola complained of more stomach pains so we had another scan, and it was confirmed she had relapsed, and they found more tumours in her tummy.’
Jodie described the difficulties her and Darren face having a seriously ill child while trying to balance life and other commitments:
‘It’s hard with Lola being in hospital all the time, but we try and get ourselves a routine which helps, as well as having help from family members and Jen from RainbowTrust.’
Having a seriously ill child changes family life and Jodie explained how the family don’t get to do as much as they used to together.
‘We are separated a lot, especially from the twins, as we are backwards and forwards from the hospital. It’s a lot different from what it used to be like. We used to do things on the weekend, like going out with the kids. But we can’t do this as easily. If the twins want to go somewhere then we have to leave Lola behind.’
The family also find it isolating at times as due to the nature of Lola’s condition, they have to keep their bubble small to make sure she does not catch anything.
‘It’s challenging and it can be exhausting, making sure you’re on time with all the regular mediations and things. I was a bit nervous at first on taking on Lola’s medical needs, but the hospital trained us up before. I got used to it quite quickly.’
Jodie got talking to another parent on the ward who was being supported by RainbowTrust and quickly reached out to self-refer for support. RainbowTrust Family Support Worker Jen has been supporting the family since July 2022, providing sibling support for Lola’s brother and sister – Isaac and Isla.
‘I was worried about the twins and wanted them to feel supported throughout it all. Jen is just really good because she takes them to soft play, or to different places and she visits them in school to play with them there.They really enjoy it’.
‘It’s made such a great difference to Isaac and Isla’s lives, Jen makes sure they still have fun and makes it all about them when she’s about. Life without Jen would be tougher, because Isaac and Isla wouldn’t have as much play time and time to themselves. She helps answer any questions that they have, as they tend to open up to Jen a bit more than they do to me.’
Jodie encourages parents of a seriously ill child to reach out to RainbowTrust:
‘You can ask them anything and they will help you with what you need. It’s just really good.’