A small ray of light


SURVIVOR Roscommon girl Isobel Cullinan, now ten years old, holding a pin in the shape of a gold ribbon, the international awareness symbol for childhood cancer. Pic: Andres Poveda

Ciara Moynihan

To have a child is a blessing beyond words. The idea of them suffering, even a small bit – a bad cut on their knee or bump on their head – is enough to stop a parent’s heart. Imagine what it must be like to hear their perfect young body has been invaded by a frightening disease, one that threatens to take them away forever. Imagine trying to explain to your child what is happening, to comfort and support them as they undergo treatment, all the while hoping against hope that they will survive. Imagine the shock, the heartache, the terrible fear.         
Every year, around 60 children, adolescents and young adults are diagnosed with cancer in the west of Ireland. So many families’ lives turned upside down.    
Tomorrow, February 15, is International Childhood Cancer Day – and a chance to raise awareness about the deep personal impact that this scourge of a disease can have not just the child, but also on their parents. Ahead of this special day, national children’s cancer charity Childhood Cancer Ireland has announced a new series of workshops to help parents overcome the trauma of a childhood cancer diagnosis.
The first workshop, entitled ‘Putting the pieces back together: understanding the experience and taking steps forward’, will take place in Sligo on March 11. It aims to help parents here in the west begin to process the emotional rollercoaster they have been on since their child was first diagnosed.  
The CEO of Childhood Cancer Ireland, Laura Cullinan, is also the mother of a childhood cancer survivor. Her beautiful daughter Isobel was diagnosed with cancer twice. She was diagnosed with cancer of the kidneys when she was just 21 months old. After eight weeks of chemotherapy and the removal of one of her kidneys, she was deemed cancer free. However, two weeks after her third birthday, the cancer returned.
Two tumours had been found on Isobel’s lungs. The doctors told Laura and dad John that their daughter’s chances of surviving were 50:50. After seven months of gruelling chemotherapy and radiation, and a complex operation that saw part of her left lung removed, Isobel did just that. She survived.
Laura describes the experience and the immense toll that the diagnosis and treatment takes on a parent. “To hear the words ‘your child has cancer’ is devastating, and it has a huge impact on the entire family. Depending on the type of cancer a child has, families could be in treatment for up to three-and-a-half years, with further scans and check-ups after that, which prolong the anxiety and fear.
“As a parent, it’s like you are holding your breath during this time. Your worst fears have been confirmed and you don’t know what’s coming next. Many of us only begin to breathe again after treatment has ended.”
In the earlier stages of childhood cancer, parents are often in ‘doing’ mode; managing medical appointments, being away from home for extended periods, arranging childcare for other children and organising financial commitments and work. They are running on empty and with minds that are in a constant alert and vigilant state, and they can get stuck in this mode well after treatment ends. 
“We listened to parents tell us they were struggling,” Laura explains. To help, Childhood Cancer Ireland put these workshops together to help parents figure out what has been happening since hearing those dreaded words, and to provide some strategies to help them both as an individual and as a parent.
“As parents, we often put ourselves last but we have to prioritise our own wellbeing in order to help our children deal with what they have been through.
“In our case, we were travelling from Roscommon to Dublin with a sick child, leaving a six-year-old and a baby at home either with a relative, childminder or family friend. As a parent, it is really difficult to feel so torn and parent-child bonds can be affected with the siblings who are left at home. It can take time to rebuild and to deal with the trauma that the whole family has been through.”   
Nationally, an average of 353 children, adolescents and young adults are diagnosed with cancer each year. A parent and survivor-led charity, Childhood Cancer Ireland represents the voice of children and young people with cancer, survivors and their families.  Those involved understand intimately the impact that a diagnosis of childhood cancer has on the entire family. 
For this workshop, Childhood Cancer Ireland will be joined by Debbie Cullinane from Claremorris, a qualified child and adolescent psychotherapist and play therapist and a former primary school teacher. 
“Parenting is hard and putting the pieces back together after a trauma like childhood cancer can take time. The aim of these workshops is to let parents know that this is okay.  They don’t need to put too much pressure on themselves,” Debbie explains.
“I will help parents to understand ‘good enough’ parenting, and we’ll focus on a return to connective parenting, which is important when a family has been through something like this.
“It doesn’t have to be overwhelming – parents will be able to find tiny moments of connection and engage through play, as well as understanding what’s happening in their child’s brain (fight, flight, freeze) and helping them to regulate their emotions,” explained Cullinane.  
Also joining will be Dr Mairéad Brennan, Senior Clinical Psychologist with Cancer Care West, a cancer support centre in Galway, where she developed a child and family service.
If your family has been impacted by childhood cancer, do consider this workshop. It might help you through these difficult times and dark days. A small ray of light.
The parent workshop for the west of Ireland takes place in the Sligo Park Hotel on Saturday, March 11, from 9.30am to 4pm. Refreshments and lunch provided. Financial assistance with travel costs can also be provided if needed. For more information on the full programme, and to register, visit www.childhoodcancer.ie/parent-workshops.