‘Just as each diagnosis is different, the impact is unique to each young person and their family’
Trim Castle and Millmount in Drogheda are among the many iconic buildings around the world that have been “Light it up Gold” this month to raise awareness of childhood cancer.
A Bellinter woman, whose daughter was diagnosed with leukaemia at the age of ten is one of the driving forces behind Childhood Cancer Foundation Ireland which is involved in many projects to raise awareness of childhood cancer and provide supports to children and their families who face the trauma of a cancer diagnosis.
Mary Claire Rennick is a founder member and voluntary director of Childhood Cancer Foundation Ireland. “We provide support and give a voice to children with cancer and their parents.”
She explains that the ‘Light it Up Gold’ Campaign takes place in September and they also have a new podcast series called Gold Ribbon Conversations. They feature a paediatric oncologist, a bereaved parent, a parent of a child in treatment for leukaemia and others.
“The ‘Light It Up Gold’ campaign raises awareness of childhood cancer and it also remembers those we have lost to childhood cancer.”
Mary Claire was also one of the organisers of the first ever conference on Childhood, Adolescent, Young Adult Cancer and Survivorship (CAYAS) in Ireland which took place remotely earlier this month.
“The theme for our conference was #ForwardTogether and our aim was to bring together all those impacted by cancer in young people. We connected patients, survivors, parents, families, carers, advocates, health care professionals, researchers and policy makers to update, educate, network and learn from one another.
“We want to highlight, encourage and support collaboration within the Childhood, Adolescent and Young Adults and Survivorship (CAYAS) community and keep the lived experience at the heart of the conversation.”
Mary Claire got involved when her daughter Alice was diagnosed with APML Leukaemia in 2013.
“She was in treatment at Crumlin for two and a half years and she has been clear since. We are fortunate she came out of it well.
“She has now completed her Leaving Cert and is very happy about starting an Arts degree in NUIG.”
Alice, who is now 18, was working as a Euro Camps Representative in the South of France since early August, before starting college.
Mary Claire is married to Brian Rennick , solicitor in Dunboyne and she is a solicitor herself, although she is not practicing. They have two other children, Sophie (22) and William (16).
Mary Claire points out that more than 300 children and young people are diagnosed with cancer in Ireland each year.
“A diagnosis has devastating effect on them, their families, friends and the wider community.
“Just as each diagnosis is different, the impact is unique to each young person and their family. The challenges can be many including physical, emotional, cognitive, financial, and psychosocial.
“These challenges may present at the time of diagnosis, during treatment and into long term survivorship”. Mary Claire explains that the Childhood Cancer Foundation Ireland was formed in 2013 by a group of parents whose children were being treated for cancer in St Johns Ward in Crumlin Hospital. The foundation is a national, voluntary, parent-led charity to raise awareness of childhood, adolescent and young adult cancers. It funds emotional supports and services for these young people and their families.
“When a child is being treated for cancer they have shared care.
“They go to Crumlin for diagnosis and treatment, but during treatment if they have a temperature, need antibiotics or blood work done they go to their nearest paediatric unit.”
“They will probably have to be in isolation when they are in the shared care hospital and some of those rooms can be pretty grim and we have been helping to upgrade them.
“The Foundation has funded electric beds, wall mounted monitors, TVs, Playstations and hand held devices as well as wardrobes and vinyl wall art for these rooms.
The foundation funds play services on oncology wards and a siblings programme for brothers and sisters of young cancer patients.
“We run the Beads of Courage programme. Children get beads for every part of their treatment- there are different coloured beads for each aspect – blood tests, chemogtherapy, ambulance transfers, every night spent in hospital, the number of birthdays they spent in hospital.
“The beads can be used by the child to tell their story. It is part of an international programme and is very empowering.”
The Foundation works with other cancer charities to address unmet needs. “We lobby for psychological and social supports and on the issue of fertility preservation.
“There is also a need for better financial supports. We also focus on the specific needs of adolescents. At the moment, once you hit 16 you will be treated in an adult unit, and these are not equipped for adolescent patients.
“We have a peer to peer network where parents are trained to give emotional support to parents as they go through the treatment process.”
Mary Claire says the Foundation plays an advocacy role.
“We aim to be the voice of children, adolescents and young people with cancer and advocate for them.
“We want to ensure that more children survive childhood cancer and thrive as adults, through early diagnosis, access to less toxic treatments and a holistic approach to support for survivors and their families, who are dealing with the long-term effects,” Mary Claire explains.