Becoming parents can be a dream come true for parents, but what happens when that dream turns into a nightmare?

When Alex and Richard McKee, of Sunbury, had their second child Rafe, they were over the moon. Mum Alex, 33, said he was “very active” and she loved having such an energetic child.  

“He was very good at getting himself into mischief.”

However, in June 2015, the McKee’s lives were turned upside down. When Rafe was 19 months old he was diagnosed with acute lymphocytic leukaemia.

“Your world contracts to the room that you’re in. You don’t know how to deal with it. You deal with it minute by minute,” explained Alex.

The ordeal began the month before he was diagnosed when Alex and Richard began to notice things that alone would not have been worrying, but together caused concern.

Rafe was waking at all hours of the night, he was having trouble breathing and was jolting frequently in his sleep. He would become fatigued very easily.

“He would lie on the sofa, head in his hands, crouched there as though he was trying to block out the world,” said Alex.

At first the doctor thought it was asthma, then pneumonia and he was put on antibiotics which eased the symptoms for a little while.

Then his mother, who is a self-employed child minder, began to notice bruising- which increased until he was covered in them.

Alex brought him to the doctor who did a physical examination and told her to try not to worry- but she did. When Mrs McKee arrived home she googled the examination the doctor had performed and the top result- cancer.

Frantic, she brought Rafe back to the doctor with a list of all his symptoms and demanded a blood test. A nurse rang Kingston hospital with the information and they were told to go there immediately.

That day they were told it was cancer but further tests needed to be done to figure out which one.

Alex said: “We were shocked but I was almost relieved. I knew something was wrong and now something was going to be done.”

Rafe has the most common form of childhood leukaemia which Alex sees as lucky in a way.

She said: “It has the best success rate of all childhood cancers.”

Your Local Guardian:

Rafe and his dad

At 19 months, her son began chemotherapy at St George’s Hospital, which will continue until 2018- a course of three and half years.

“He lost his hair after two weeks. He was on steroids as well which really bloated him and gave him mood swings- he would get really angry and upset. And he was ravenously hungry,” Alex said.

Rafe’s appetite was usually big but sometimes he would be unable to stomach food and had to be fed through a tube. His skin became extremely sensitive and he would break out in sores at the lightest touch.

As a result of a fungal infection Rafe was hospitalised from mid-July to mid-September and Alex and Richard split the time between them so someone was always with Rafe.

“We ended up sleeping with him in bed as he had to sleep holding on to us. He would get very upset if you went to the bathroom and he realised you weren’t there.

“Also, in the beginning he didn’t want to tolerate anyone other than me. He would cry for a long time when I left,” said Alex.

The couple also have another child, Evie, who is five and they have been very honest with her about the situation.

Your Local Guardian:

Evie and Rafe

Alex said: “It’s been very hard for her being apart from him- she’s been having bursts of anger. She’s always been feisty but her emotions are taking over. In a way she’s had to take a back seat- she’s always the one who has to suck it up if something comes up with Rafe.”

Alex worried that Evie was not getting the attention she needed as she and Richard “barely had the mental capacity to play with her”. With work and Rafe’s illness it was a struggle to cope even with daily chores.

Although her family are close, Alex’s parents are elderly and her mum suffers from Parkinson’s.

That is where Rainbow Trust family support Worker Lyn Sweet came in. Rainbow Trust Children’s Charity supports families who have a child with a life threatening or terminal illness. They sent Lyn to ease the hardship the McKee family were going through.

“It was really nice to have someone independent,” said Alex, “you can never repay your family for the help they give you so it’s liberating to get outside help.”

Lyn now spends lots of time with Evie, playing with her or bringing her to school.

“She was able to switch on to exactly what we needed. It’s such a nice relationship.”

Lyn gives lifts to the hospital and parks the car so they can get straight to Rafe.

“I know it doesn’t sound important but if you’ve ever tried to park in a hospital you’ll know what I mean,” said Alex.

Alex used to spend a lot of time with her mum, especially talking about books, which she never has the time to do anymore. However, recently, Lyn offered to do a shift so Alex could spend the afternoon with her mother.

The McKee family has to be careful with money at this time but the Rainbow Trust gives them free days out so they can enjoy some much needed time together. They spent Rafe’s third birthday, on November 23, at an aquarium.

“They are little treats that lighten things up,” said Alex.

Your Local Guardian:

Mum, Evie and Rafe

She cannot help but feel wary about the future.

“It’s a tricky one. You want to be optimistic and we are optimistic. But I will worry about him for the rest of his life,” she said.

Chemo at such a young age can have serious complications in later life such as bone density issues and heart problems. Alex admits it will be hard to treat him like a normal child.

She said: “Most of the time I have good days and most of the time I am able to deal with it. But I know there will be days in the future when it will weigh heavily on me. In ways we’re lucky, he could have had the rare kind.”

Rainbow Trust Children’s Charity provides emotional and practical support through its network of Family Support Workers who help families at home, at hospital and in the community to make life a little easier. 

Individually tailored high quality care is offered from diagnosis through to treatment and, should a family become bereaved, Rainbow Trust continues to support them for as long as they are needed, helping family members cope with the present and preparing them for the future.

The charity relies on donations as only three per cent of their funding comes from the Government.

To donate: https://rainbowtrust.org.uk/donate

Let me know your view: grainne.cuffe@london.newsquest.co.uk