A Glenrothes family is encouraging other parents to follow their instincts when it comes to seeking medical advice.
Carol Donald has spoken about her family’s experience, after her daughter Darcy (7) was diagnosed with chordoma – a type of bone cancer – in January this year.
Darcy was born with a condition called congenital kyphosis of the spine, which meant she had two operations as a baby to correct, and saw her visit a specialist at the Royal Hospital for Sick Children (RHSC) for yearly check-ups.
Carol explained: “When Darcy was about two or three I noticed that she had one bum cheek bigger than the other. I asked about this and was assured everything was okay. We now know that in fact that was one of her larger tumours.”
Darcy’s mum also noted that, from around the age of three, Darcy was sorer than normal and had a weakness on her left leg.
Carol continued: “I was again informed everything was normal and it was likely to be growing pains. This followed for another few years with me being back and forth to the specialist and GPs.”
Last year, Darcy became more sore, lost weight, and had less energy.
Carol said: “I went back to the GP, who referred me back to see Darcy’s specialist, who took x-rays and reassured me this was all growing pains.”
In January, after Darcy had started to fall over daily and was using a mobility scooter to get to school, Carol ended up taking her to A&E in Kirkcaldy.
She said: “She was kept in for a MRI and we were told two masses had been found. We got her diagnosis on January 12 and one week later we were told she was terminal.
“Since then we have been between the Sick Kids and Rachel House. We finally got Darcy home last week but continue to get support from Rachel House such as respite and support for me and the children coming to terms with Darcy’s diagnosis. They have also helped massively to make memories.”
Carol is now urging other parents to follow their gut.
She said: “I knew there was something wrong and feel like if doctors had investigated Darcy’s symptoms she might have been able to be treated or at least we might have got longer with her. I never want another family to go through what we’re going through.”
Dr Christopher McKenna, NHS Fife Medical Director, said: “We are unable to comment of the care of individual patients for reasons of confidentiality.”
NHS Lothian, which covers RHSC, was unable to comment on individual cases without patient consent, but advised patients with concerns to contact them to discuss it further.