Karen’s daughter Caoilfhionn, aged three, was diagnosed with neuroblastoma in October 2014 when she was just a year old. Caoilfhionn’s parents noticed she was sweating a lot and initially thought this was due to a congenital heart defect that she was diagnosed with at five weeks old.
Caoilfhionn was referred for x-rays and an ultrasound, and Karen was prepared to be told the problem was related to this condition.
Sadly, results revealed that Caoilfhionn had a tumour behind her kidney and she underwent an eight-hour surgery at Royal Belfast Hospital for Sick Children.
Thankfully, the family got the news that she wouldn’t need chemotherapy a couple of days before Christmas.
“The initial shock was unbelievable. When Caoilfhionn was in surgery it was one of the hardest times, we were so worried.
“The time kept ticking on and we were getting worse and worse. We got really frantic.”
Data collected by CLIC Sargent, released as part of September’s Childhood Cancer Awareness Month, has found that more than half of parents (63%) said they experienced depression during their child’s treatment, more than a third (37%) experienced panic attacks, 84% experienced loneliness. Worryingly, less than 40% of parents accessed support for managing stress and anxiety during their child’s treatment.
Karen said: “While we were in hospital with Caoilfhionn the feeling was sort of indescribable. It felt like my chest was caving in. It was desperate. Emotions were running high and I was crying all the time.
“I didn’t realise at the time, but I was suffering with anxiety. If I left the ward to get a drink or something I would get back to the doors and I just couldn’t breathe. I found it overwhelming standing at those doors to go back in.”
“I felt like if I spoke to people about how I felt and what was going on I was burdening them with it. That definitely added extra stress. The focus is on your sick child and nobody really asked how we were doing, which of course is completely understandable. But we were hurting.
"We were broken. At the time it was like my life was just upside down.”
During this difficult time the family were supported by a CLIC Sargent Social Worker and Karen is now keen to raise awareness by sharing their story in a bid to help others.
“We met our CLIC Sargent Social Worker Gillian quite early on and she was fantastic. She arranged for us to get a CLIC Sargent grant, which was a great cash boost at such a difficult time.
“She looked at every possible way to get us support. If we didn’t have that help we would’ve been in real trouble.”
The family also stayed in CLIC Sargent’s Home from Home, Paul’s House, which provides free accommodation for families whose children are undergoing cancer treatment at Royal Belfast Hospital for Sick Children.
Karen is now encouraging people to start talking about the hidden cost of cancer.
She said: “Getting involved in this new campaign has opened up conversations in some unlikely places. As a treat every few weeks I get my nails done and I was talking to a lady in there about how I’d been affected by Caoilfhionn’s diagnosis. It’s not something I would usually do but she also told me about her own struggles and we were sort of able to support each other and talk about our experiences together.
“You just never know what someone else is going through and feeling like you’re able to talk openly is a huge thing. My Granny’s saying was ‘there is always a story behind the smile’, which I couldn’t agree with more.”
Kate Lee, Chief Executive of CLIC Sargent, said: "Parents like Karen have shared painfully honest accounts with us highlighting the hidden costs of cancer – whether it’s the panic they feel every time their child has a high temperature, the emotional strain of staying strong for your family or fearing relapse at any time.
"To be told your child has cancer is devastating news but these findings show just how stark the reality can be for parents. It is vitally important that these families can talk about what they are going through and get the support they need. At CLIC Sargent, we know cancer’s impact stretches far beyond the shock of diagnosis and can last long after treatment finishes, this is why we strive to support the whole family, not just the person with cancer”
For more information visit our Childhood Cancer Awareness Month page.