Nicole Aghar was just eight weeks old when her mum Lyndsey noticed her daughter’s eyelids flickering oddly. Nicole was Lyndsey’s first child, and like any first time-mother, Lyndsey was worried she was being overly anxious.
Not wanting to ignore her motherly instinct, she took Nicole to her local GP who referred Nicole immediately to the hospital on Christmas Eve 2007. A month later, the family were given the devastating news that the flickering eyes Lyndsey had witnessed were the symptoms of a brain tumour. There was more bad news. The location of the visual palsy glioma tumour meant that it was too dangerous to operate on and that the tumour had destroyed Nicole’s sight. Nicole was blind. Doctors were unable to operate without causing further damage and prescribed 18 months of aggressive chemotherapy.
Lyndsey was told about Rainbow Trust by a social worker when Nicole was first diagnosed at three months old. Lyndsey was adamant that she didn’t need the help of outside services and refused the support of a Family Support Worker, worrying that it reflected badly on her capabilities as a mum.
The day after she was christened in February 2008, Nicole’s chemotherapy treatment began. For Lyndsey, Nicole’s treatment and hospital stays proved an upsetting and lonely period. Nicole’s father, Andrew, had used up annual leave for Nicole’s previous hospital appointments, scans and early treatment and was told he’d have to take unpaid leave for any further absences from work. Unable to live without Andrew’s salary, Lyndsey spent weeks by Nicole’s bedside alone, staying overnight whenever her daughter needed to stay in and watching her hooked up to machines, giving her treatment and medication, blood and platelet transfusions that made her desperately ill. Lyndsey found it difficult to keep five month old Nicole occupied, and her blindness meant that Nicole didn’t know when it was day or night and so proved a fitful sleeper.
Neither Lyndsey nor Andrew could drive, and so they were both reliant on their parents for transport to and from weekly hospital appointments. Andrew would spend time with Lyndsey and Nicole on days off at weekends, but mostly Lyndsey was alone with Nicole. Despite her painful chemotherapy treatments, which made her bones ache, Nicole was a happy child, always laughing and very responsive to her mum and close family.
When Nicole was 18 months old, the support of Rainbow Trust was again suggested to Lyndsey who realised how the charity could support her and Andrew and gratefully met with Family Support Worker Vicky from Rainbow’s County Durham based team.
Looking back Lyndsey muses: “We’d have been lost without Vicky, I understand that now. I was worried that people would think I didn’t care about my daughter if I let someone else sit with her in hospital, but I realise now that I needed support to continue to support my daughter.”
Vicky’s impact on the family was immeasurable. Lyndsey no longer had to rely on her parents or in-laws to for transport to the hospital, and instead Vicky offered professional, reliable transport assistance in her special Rainbow car, and the chance to chat through Lyndsey’s worries during the journeys. Lyndsey now had another daughter, Brooke, to look after, meaning that her time was split between her two children, one in hospital, one at home. If Nicole had a long stay in hospital, Vicky would visit, allowing Lyndsey to go and eat in the hospital canteen, collect clothes or toiletries from home or see her baby daughter. During chemotherapy treatment, when Nicole felt well enough, Vicky would take Nicole and younger sister Brooke out to the park or on day trips to the Farm or soft play centres. Lyndsey soon began to rely on Lindsay’s weekly visits, and remembers:
“I now know I couldn’t have gone on coping with all the stress without Vicky’s help. I think I would have broken down without Rainbow’s support. I used to get really defensive about Nicole, not wanting anyone’s help other than my close family. Nicole’s illness has been such a strain on all us. It took me a while to trust Vicky but she has never let me down and is wonderful with Nicole and Brooke. I really don’t know what I would have done without her help.”
Unfortunately for Nicole, her recovery has not been without setbacks. She has relapsed twice since the initial diagnosis and has endured two more courses of chemotherapy before her current course. Complications have arisen due to the length and strength of the chemotherapy treatments and Lyndsey and Andrew have been warned that Nicole’s bone marrow is weak and tiring and her hearing has been affected. Nicole is now on a different course of treatment for a year which she has so far had far less side affects from.
At her last scan, witnessing a shrunken tumour, Nicole’s doctor told Lyndsey that “We are winning, it’s just going to take a matter of time” which has left Lyndsey and Andrew feeling a lot more positive about Nicole’s future. Nicole starts school in September, and Lyndsey is looking forward to enjoying Nicole making friends and reaching further milestones. With Vicky’s help she can remain strong for her family and fight for Nicole’s good health.
“People always ask me, how do you do it, how do you cope with everything that has happened with Nicole. I tell them, the day it breaks Nicole, is the day it’ll break me. She is such a happy joyous child, how can I give up when she has so much to live for? Rainbow’s support means I can cope as best as I possibly can for my family and for Nicole.”
Thank You to all our supporters, without your donations we wouldn’t be able to help families like Nicole’s.
Miriam and Jeremy Tasgal from Barnet have two children, eight year old Michael and six month old Yehoshua. Yehoshua was born with severe hypoxia which resulted in brain damage. Yehoshua now has severe learning difficulties and possible blindness. Due to his inability to suck and swallow, Yehoshua is fed by a gastronomy tube through his stomach.
Rainbow Trust Family Support Worker Eva has been supporting the Tasgal family for six months, helping with transport to appointments at London’s Royal National Throat, Nose and Ear and Barnet hospitals, and offering emotional support to mother Miriam during home visits. Eva also spends time with brother Michael, playing and doing arts and crafts.
Talking about the support Rainbow Trust has offered, Miriam says: “When you have a sick child suddenly everyone has ideas about things you can do that might help. Everyone has an opinion. Everyone is an expert. And sometimes you don’t want people to talk at you, you want people to listen. Eva is really good at that. It’s been wonderful to meet someone who is allowing us to go on this journey, wherever it ends, and giving us the support we need to get through it. Going through what we’ve been through, you quickly learn to really appreciate people like that in your life; they are few and far between.
“We live in a very close-knit Jewish community, which sometimes can be wary of accepting outside help and look to wider friends and family for support. We’re relatively new to this community and we haven’t got family near by. Eva is very sensitive to our beliefs, and we’re very comfortable around each other now. On her first appointment with us she offered to sit with Yehoshua during a hospital visit so we could return home to observe Sabbath. Eva understands that our faith is incredibly important to us and a great support at times like this.”
Rainbow Trust supports families like the Khans. Daughter Anisah was diagnosed with bone cancer when she was nine years old. Rainbow Trust Family Support Worker Linda has supported Anisah's brother Ismael and four sisters Sameena, Maryam, Humayra and Zahra through Anisah's chemotherapy treatment and life changing operation to remove the tumour from her leg.
Her parents Zafar and Sarfraz explain the difference Rainbow Trust makes to their large family.
"The cancer wasn't just Anisah's illness, it affected the whole family. Every one of us has changed as a result of the experience. Rainbow helped us go through this ordeal as a family, together and stay as strong as possible.
"All of Anisah's siblings help with her care. They go to hospital appointments with her and help support her around the house. Her older sisters have been especially busy with her care over the holidays, putting her to bed during the day if she feels tired and making sure she is never alone in case she faints or falls. We know it impacts on their social lives but we need their help to look after Anisah.
"Anisah's sister Maryam has just finished her A-levels, but she hasn't done as well as we thought she would. Maryam used to love college and she was predicted really high results and wanted to be a pharmacist. The stress and emotion of Anisah's illness meant that she didn't want to go to classes and struggled to concentrate on college work. She's so close to Anisah, and struggled to deal with what was happening to her and what could happen in the future. She'd sit in the library day after day, not knowing what to do. She needed our help and support and because we were away at the hospital with Anisah, we just weren't there for her.
"Linda provides the best kind of support for Maryam and Anisah's brother and sisters, she laughs with them and takes their minds off what is going on for a couple of hours. She listens to any concerns they have. Linda is just trustworthy. We're always wary of talking to outsiders about Anisah and what we're going through but both of us and the children feel very comfortable talking to Linda."
Anthony was admitted to hospital urgently, needing brain scans and a number of emergency operations to remove part of a brain tumor. This operation did not go as well as the medics wanted and he spent 5 weeks in hospital in a serious condition undergoing different operations on his brain.
During this time his 8 year old sister, Carolyn, stayed with her grandparents. Carolyn had become extremely withdrawn during this time. She was grieving – her mother, father and brother had left her for 5 weeks, she hardly saw them and this left her feeling isolated and worried. Do they love me? Am I important? Why don’t they come and get me?
Once Anthony was home, he was the centre of attention and had all of his relatives rallying round him and buying him new toys. Mum and dad needed to talk about what had happened and Carolyn noted and heard everything that was said. She didn’t feel important anymore. Even in the school playground, her friends, their mums, and her teachers all talked to her about Anthony.
Mum spoke to a social worker about her concerns for Carolyn. She recognised what had happened and that Carolyn needed some support. The Social Worker referred her to Rainbow Trust and a Family Support Worker came to visit the house to see Carolyn, not Anthony, nor her mum or dad.
Carolyn enjoys doing art and craft activities and is happy if Anthony joins in but knows that Carla is there for her. Carolyn also enjoys going out to the park playing games and sometimes Carla picks her up from school and they go out for their tea. Carolyn is beginning to settle down, she will talk to Carla about some of the events that have taken place but often just likes to talk about general things.
Anthony’s parents have recently been told that the tumor is continuing to grow and the medics are unsure what they can do. Carolyn sees Carla on a regular basis, who continues to work with her and support her throughout the period that she needs that special someone just for her.
Last year Rainbow Trust spent 3,259 hours supporting siblings of terminally ill children.
At Rainbow Trust we recognise that it is not only the sick child who is affected by illness - it impacts on everyone in the family. We know that siblings feel worried about their brother or sister and fearful about illness changing their family life. Rainbow Trust Family Support Workers get to know all the family members and spend time with brothers and sisters, helping them to understand their siblings' illness and providing the opportunity to ask any questions they may have. Playing games, day trips and one to one support are ways in which our Family Support Workers reduce sibling stress and increase opportunities for leisure activities.
Rainbow Trust's unique and individual support benefits siblings by improving their relationships with sick brothers and sisters through increased communication between parents and brothers and sisters about their worries and illness. Family Support Workers empower siblings with the skills to help themselves at difficult times by giving them time just for themselves.
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