Childhood Cancer Ireland introduces a new workshop in 2023, aimed at parents / guardians of children, adolescents or young adults who have received a diagnosis of childhood cancer.
As a parent and survivor-led organisation, we understand the impact that a diagnosis of childhood cancer has on the entire family. As a parent, you may only be able to try to process what you’ve been through well after treatment has ended. It can be really difficult to allow yourself to do this – it’s daunting to face the emotions of the last few years.
The aim of this 1-day workshop is to figure out what has been happening in our brains since we heard those dreaded words that confirmed our worst fears, and to provide some strategies to help you as an individual, a parent and a partner/friend.
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Empowering Parents and Survivors
We empower parents and young people by providing workshops and training sessions which help you to find and use your voice.
Sharing your story is a reminder to you and others that you’re not alone. Every story is different and telling yours can be a powerful tool in helping you to have your voice heard, help others to understand your experience and even to bring about change.
That may be through campaigning, talking to the media, or just helping your community to better understand your experience. Our workshops for parents and young people will focus on enabling you to communicate your story, as well as your thoughts and opinions to have your voice heard in a meaningful way.
Our workshop for young people will enable them to amplify their voices and to self advocate in different situations (such as healthcare or education).
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Parent Peer Support
Childhood Cancer Ireland runs a peer-to-peer support service for parents and adult family members of children, adolescents and young adults with cancer. Childhood Cancer Ireland has three trained peer support volunteers who offer support to parents. We know what it’s like to feel isolated, confused, scared and alone during this time and we are here to listen and provide emotional support.
It can be really helpful to talk to someone who has been in a similar position to you. Support is offered over the phone.
To be referred to one of our parent volunteers please call the Irish Cancer Society Support Line on Freephone 1800 200 700 or email [email protected]
Beads of Courage®
Beads of Courage® enable children to tell their story using colourful beads as meaningful symbols of courage that commemorate milestones along their unique treatment path.
This international programme has been proven to decrease stress, increase positive coping strategies and help children find meaning in illness. Children have something tangible they can use to explain their experiences.
We were delighted to bring the Beads of Courage® programme to Ireland and continue to fund it.
Once enrolled on the programme, your child will receive beads for various treatments and procedures, as well as special courage beads along the way.
How to access the programme
The programme is run by the Play Specialists in St John’s Paediatric Cancer Day Ward, Children’s Health Ireland (CHI) at Crumlin. Please speak to one of the Play Specialists about the programme and they can get you started.
Sibling Beads of Courage
Over the last few years, we have worked hard with CHI at Crumlin to introduce a Sibling Beads programme. As any family who has been through a diagnosis of and treatment for childhood cancer knows, it is not just the child themselves who is affected – siblings may struggle to come to terms with the changes in their family, the concern for their siblings and they wonder what it all means for them.
The Sibling Beads programme allows siblings to work through their emotions and fears during this difficult time.
Sadie’s Beads of Courage
These are my daughter Sadie’s beads of courage – all 1179 of them. She is two and a half years old and has been in treatment for Neuroblastoma cancer since she was diagnosed at 5 weeks.
Each bead represents a part of her journey, from hundreds of routine dressing changes to ICU transfers, nights in hospital, chemotherapy, radiation, immunotherapy, general anaesthesia, blood transfusions, surgery, stem cell harvest, MRIs and many, many more. Each bead symbolises a story of strength, honour and hope.
Collecting Sadie’s beads gave us a tangible representation of all she endured and overcame on a daily basis. It gave us a way to share with our family and friends what life in treatment is like and allowed for a connection that is difficult to achieve when stumbling through the darkness and isolation of childhood cancer.
We hope that they will one day help her to understand all that she experienced and overcame in her first years of life.
Your Treatment Outside of Crumlin
Many children living outside Dublin also attend one of the 16 shared care / regional hospitals. There, they are treated in isolation rooms, which they cannot leave to use the playroom or other ward facilities.
We aim to improve facilities and supports for these children attending the 16 shared care/ regional hospitals, when not required to be in St. John’s Ward.
We fund equipment including wall-mounted cardiac monitors and thermometers, TVs, DVD players, Play Stations and other gaming devices, electric beds, lie-flat day beds for parents and vinyl wall art to brighten up the isolation rooms.
Mullingar Regional Hospital
University Hospital Waterford
University Hospital Kerry, Tralee
Portiuncula University Hospital, Balinasloe
Sligo University Hospital
Letterkenny University Hospital
Our Lady of Lourdes Hospital, Drogheda
Wexford General Hospital
Midland Regional Hospital Portlaoise
Mayo University Hospital
University Hospital Limerick
St. Luke’s General Hospital Carlow/Kilkenny
University Hospital Galway
Cavan General Hospital
Mercy University Hospital
South Tipperary General Hospital
Advocacy is at the heart of our mission of achieving health justice for all children, adolescents, young adults with cancer and survivors (CAYAS), across Ireland.
We are dedicated to being the voice of children with cancer in Ireland. We do this by raising public awareness of the many issues affecting CAYAS, their families and communities and influencing policy at national level to ensure equal access to the most up to date treatment protocols, research and supportive services.
Read more about our work as the voice of children’s cancer in Ireland.
Childhood Cancer Ireland is proud to have supported Play Services on St. John’s Day Ward in CHI at Crumlin from 2015 to 2022.
We started out by funding a part-time position in 2015. This developed into a full-time position before long and we are delighted that the HSE has seen the value of this role and have now taken over the funding of this vital service.
Play therapy is a vital service that supports the medical team, by role playing the procedures a child will have to go through, demonstrating them using adapted dolls and simulating an MRI so the children are familiar with the noise and shape of the machine. Having access to play therapy reduces distress and helps the children develop the positive coping strategies they will need to get through during up to three years of treatment, and sometimes more.
The wonderful Play Specialists work with children to ease the burden of attending St John’s Day Ward for chemotherapy and other invasive treatments, offering stimulation and support when it is needed most.
How to access the programme
The Play Specialists visit all children following diagnosis. If you have not yet met with a Play Specialist, or would like to request a visit, please speak to a member of the nursing staff, who will organise this for you.
Michael’s coping mechanism in hospital is to block things out, so most of the time he ignores the doctors and nurses. He doesn’t realise the extent of the good they are trying to do. It can be a bit embarrassing, because they are all so lovely to him, but he knows when he sees them that something is going to happen.
My husband and I were very worried about him getting depressed at the start of treatment because he just went so quiet, but the Play Specialists got him talking and playing again, which helped take that worry away. They really play such a vitally important role in Crumlin, they’re forever helpful.