AS Calum Lambert sits smiling amongst his Thomas the Tank Engine toys, his beaming face gives little away about the illness that so nearly derailed his childhood.
Less than a year ago, his parents had no reason to suspect the regular bugs he was picking up were caused by anything other than the company of other children at nursery. Visits to the doctors put his illnesses down to viral infections – nothing that a soothing dose of Calpol wouldn’t fix.
Naturally mum Diane was worried when he suffered a massive nosebleed but any fears were alleviated by a quick phone call to NHS 24. It was put down to his latest cold, and memories of her own difficulties with nosebleeds as a child helped put her mind at rest.
Even when Calum came home with bruised knees, he told his mum, “I fell over” – something that would not surprise anyone with a three-year-old.
“There was always an explanation,” said Diane, 37. “Looking back at photographs, you can see that he had got paler but it wasn’t something you could really notice at the time.”
But when the usually happy-go-lucky youngster stopped eating properly and his energy levels dwindled, mother’s instinct knew this was more than just a virus. She and husband Derek, 35, took him back to the doctors in November last year, where he was referred to St John’s Hospital in Livingston for a series of tests that showed his red blood cell count was dangerously low. Leukaemia was strongly suspected.
Calum was transferred to the Capital’s Sick Kids hospital where further checks discovered his illness was something much rarer but no less grim – the potentially fatal blood disorder aplastic anaemia.
“Doctors said if he did have another bleed, that they wouldn’t be able to do anything,” said Diane.
“We were absolutely devastated by the diagnosis. Obviously, no-one wants to hear their child has leukaemia, never mind anything else, but aplastic anaemia is a lot rarer and the consultant said it would have been better if it was leukaemia.
“That’s when they told us a bone marrow transplant would be his only option.”
Just 30 children in the UK a year are diagnosed with the condition – where the bone marrow does not produce enough red or white blood cells or platelets. In severe cases, such as Calum’s, where blood cell counts are extremely low, the condition is life-threatening and requires immediate hospitalisation for treatment.
Calum was given a series of blood transfusions while his family faced a long and anxious wait over Christmas and New Year for a match.
With no siblings – and parents usually unlikely to be suitable – they turned to the Anthony Nolan register to find an unrelated donor.
Within a few months, the charity found five potential matches and set about contacting the volunteers to check they were still willing and healthy enough to donate. They then set about pairing Calum with the best candidate for his life-saving operation on April 23.
“He was having blood transfusions every three to four weeks and platelet transfusions every week. That was basically keeping him alive until they found a donor for him,” said Diane.
“They did tell us that if they didn’t find a donor, the chances are he would have died. They can only sustain giving blood transfusions for so long.”
Calum was forced to spend most of the next few months in hospital as his immune system was severely compromised, which made him very susceptible to illness.
To further complicate matters, he caught chickenpox and was hooked up to antivirals for nine days, fighting the disease and delaying his transplant day at Glasgow’s Yorkhill.
The youngster recovered from that setback before facing a gruelling week of chemotherapy to make way for his new stem cells and kill off what was left of his immune system, a process that made him very sick.
In another cruel twist, Diane came down with a throat infection and was unable to go with him to the hospital for fear of him catching it.
She was forced to watch from the sidelines, while Derek, 35, was on hand at their son’s bedside at a time only mum and dad were allowed to visit him in isolation.
The operation went so well, Calum was home in Murieston by the end of May, where he continues to make good progress.
Six months on, he is still enduring a weekly blood count to see how his body is responding to the donor cells – latest scores show that 97 per cent of his bone marrow comprises of the healthy cells.
Now aged four and proud of it, the little fighter is still taking the immunosuppressant drugs to prevent rejection of his transplant and graft-versus-host disease – when the donor’s immune system attacks the new body.
If there is any doubt how much he has already been through, his 680 beads of courage, give a powerful testimony to the little boy’s amazing fight so far. With one of the sparkling jewels for every blood test, chemotherapy and lumbar puncture endured, the strands of colour paint a pretty picture of the nightmare rollercoaster he is still on.
“He’s got an awful lot of beads of courage. Every time any procedure is done, he gets another one,” Diane said.
“Calum tells the nurse at the reception desk which one he wants, and she gives him it to add to the collection.
“I don’t think he quite understands what it means yet, but when he’s older it’ll be able to show him the magnitude of what he has been through.”
With the life-long effects of his treatment not yet known, his parents are happy to embrace each milestone as it comes, taking nothing for granted and grateful to the bone marrow and blood donors that have kept their son alive.
They plan to show their appreciation for the charity during Hero Day 2014 on November 21 to help Anthony Nolan in its mission to cure blood cancer and disorders.
Friends at Bellsquarry Nursery and its adjourning school will be taking part by dressing up as their favourite superheroes and baking cakes.
Diane said: “It’s amazing that we have got to this stage, back in December we just did not think we would see another Christmas with him or we would have him for his fourth birthday in August.
“It is incredible that Anthony Nolan had a donor for him.
“Thirty years ago you were given six months to live with the diagnosis whereas now things have moved on. A transplant with an unrelated donor is as successful as with a sibling donor now.
“It’s amazing what they can actually do these days for something as rare as this.
“Calum has done so well through it all. It is amazing how resilient kids are. I certainly wouldn’t be able to cope the way he has.
“We don’t know what the future hold for him but at least we have a future with him, that’s the main thing.
“We are just so grateful that he is still here with us.”
Deadly dangers lurking in bone marrow
THE blood disorder aplastic anaemia occurs when the bone marrow fails to produce enough of all types of blood cells: red cells, white cells and platelets.
There are approximately 125 cases diagnosed in the UK every year – an average 30 of them are children.
Red blood cells carry oxygen to all parts of your body and waste product, carbon dioxide, to lungs to be exhaled.
If the bone marrow can’t make enough new blood cells, a string of problems can occur including irregular heartbeats, an enlarged heart, heart failure and bleeding. The result can be fatal but treatment for children with the condition has improved significantly due to new therapies, including blood and marrow stem cell transplantation and effective supportive care.