When Pamela Laidlaw was told her eight-month-old son had an aggressive form of cancer she remembers everything going “eerily quiet”.
Just hours before, she was standing outside her doctor’s surgery in Leith waiting for it to open to find out why her baby was pale, listless and covered in tiny unexplained bruising. She had no idea that she would soon be living every parent’s nightmare.
Now she is lobbying for the inclusion of information cards detailing the signs and symptoms of childhood cancer in every child’s personal health record or “red book”.
Yesterday, on the fifth anniversary of the day Kai was diagnosed, Pamela headed to Parliament to meet with MSPs to raise awareness of her Glow Gold campaign where she met Scottish Conservative leader Ruth Davidson, who is pregnant with her first child.
Little Kai was born in the early hours of a December morning in 2013. Pamela and husband Calvin, who has multiple sclerosis, welcomed their son who arrived a month early, weighing 4lbs 11oz. Pamela said: “He was small but he was healthy and sturdy.”
But one morning eight months later, Kai woke up and was unusually “really grumpy”.
Kai was a “little character” who adored his 25-year-old big brother, Calvin’s son from a previous relationship. That Kai didn’t light up when he saw his brother was another red flag for Pamela. She said: “He didn’t want to eat, he didn’t want to play. He didn’t want to be held but he didn’t want to lie down either.”
Pamela wondered if he was getting his first cold. She said: “He was agitated and we couldn’t get him settled.” After a restless sleep, Pamela phoned the health visitor who advised that it sounded like the beginnings of a cold. After another day of Kai not eating or sleeping, Pamela called back but she was assured it was nothing to worry about. She said: “I just knew something wasn’t right. I even bumped into some neighbours and asked what they thought. They told me he had a cold. I could feel that everyone thought I was getting paranoid.”
Kai was an early walker and had some small bruises from his tentative first steps but one day visiting the swans at Waterfront Park, Pamela noticed a “jet-black” bruise the size of her thumb on his forehead. She said: “He never cried. He wasn’t upset – it had just ballooned that afternoon.”
She phoned NHS 24 who told her bruises were normal at that age. Determined to find out what was happening, Pamela took Kai to the Leith Community Treatment Centre, a pharmacy and phoned NHS 24 repeatedly. She said: “I knew it wasn’t normal. It didn’t matter who I went to, I just knew it in my gut.”
Kai started to struggle with his breathing and Pamela was told to give him paracetamol – which can mask high temperatures in children with cancer. “Of course we never knew that, so he didn’t have a temperature,” said Pamela.
In the early hours of Friday September 13, a week after Kai woke up out of sorts, after Pamela had called NHS 24 another three times she decided to take Kai down to the doctor’s surgery. Her GP was “fantastic” and sent Pamela and Kai straight up to the Sick Kids after hearing his symptoms. Pamela said: “She warned me that we wouldn’t be getting out for a bit.”
She remembers being taken into a treatment room with lots of doctors attending to a “lifeless” Kai. Within minutes, Pamela said, equipment was being wheeled in and tests were being carried out. Pamela was in shock as she watched her son being undressed. She said: “They took him out of his sleep suit and I saw all this tiny bruising that looked like spots all over his chest and down his body. It wasn’t there that morning.
“I realised that it was so much more than a bad chest infection or pneumonia.”
Pamela was trying to get hold of Calvin, who has been at a funeral, when two new doctors arrived. She said: “There were so many people in the room and then it went eerily quiet. Everyone just sort of disappeared and an oncologist and a haemotologist came in.”
They broke the news that Kai had Infant Acute lymphoblastic leukaemia, an aggressive form of childhood cancer. Dad Calvin arrived and the pair were told there was a very good chance their son wouldn’t survive the night. “It just completely blew up our world. I remember Calvin saying to the doctor, ‘can he take anything from me, can I give him something of mine to fix him?’”
Kai spent the rest of his short life in and out of hospital with Pamela and Calvin by his side. After spending 11 months in Glasgow’s Royal Hospital for Sick Children where he was taken for a bone marrow transplant in March 2015, Pamela knew instinctively it was time for them to return to Edinburgh to see friends and family before the inevitable happened.
Kai passed away at 12pm on Monday, January 18, 2016, just a month after his third birthday. Pamela said: “It was a shock, even though I knew it was happening. Our whole world was just gone. He was so miserable at the end and he didn’t deserve that.”
On meeting Ruth at Holyrood, Pamela gave her one of the information cards she hopes will soon be familiar to every parent and child carer.
Pamela said: “I said to her, ‘a lady in your position, and a leader, knowledge is power.’
She asked me if this was something that could go in the baby box and I said you can take it and put it in the one the First Minister gave you!
“All we’re asking for is something achievable. The cards are produced at the same factory that makes the baby red books. They are already distributed in England, why is Scotland being discriminated against?”
It was a hard day for Pamela to be at parliament but she did it for Kai. She said: “We have to make a difference for the future of our children. I will always ask myself ‘what if’. And as a parent questioning yourself about something you can’t change, that lasts a lifetime.”
Ruth Davidson said: “This is an extremely important campaign, and one which I’m very happy to support. You can never do enough to raise awareness of childhood cancer, and I was delighted to welcome campaigners to Holyrood to discuss how MSPs can do more to help.
“I also pay tribute to people like Pamela Laidlaw who, despite having suffered so much, are working so hard to do good.”