‘At last, my little girl can have a normal life’
A revolutionary drug means cancer patient Charlotte can go to nursery, says Cara McGoogan
When Charlotte Stevenson packed her little bag and went to nursery for the first time on Thursday, her parents, Esther and Phil, were more worried than most. The three-yearold has been shielding since March because she has a rare cancer, infantile fibrosarcoma, which affects around five in a million children.
The Stevensons’ little girl, who is at the centre of a cutting-edge cancer trial, is entering everyday childhood for the first time.
“We’re really glad she can go to nursery and have a normal life, which so many times in the past didn’t seem possible,” says Esther, 41. “You would think she was an average three-yearold – it’s great.”
Charlotte, from Newtownabbey, Co Antrim, was one of the first children in the UK to receive larotrectinib, a revolutionary treatment that targets the genetic mutation in cancer cells rather than the area of the body where the cancer is growing.
The experimental drug has been approved for clinical trials for some children and adults whose cancers have a particular genetic marker – and is one of three treatments profiled in Channel 4’s Can We Cure Kids’
Cancer?, which airs on Wednesday. “We signed up to the trial to get Charlotte better,” says Esther. “But the wonderful by-product might be the development of a drug that will let people undergoing cancer treatment have a normal life.”
Esther has just taken Charlotte to her first day of nursery when we speak over Zoom and she tells me it was “nerve-wracking. Like every other parent, I was panicking about sending my precious little one off.”
But it also felt like a near miracle. The youngest of three – her siblings are Lucy, 12, and Caleb, 10 – Charlotte was admitted to hospital when she was three months old after suffering from severe eczema and intermittent vomiting. Then doctors discovered a tumour in her lung.
“You feel numb and can’t take it in,” says Esther. “I couldn’t believe it. You have this lovely, new, bouncy baby and then you’re in intensive care. It seemed to happen just like that.”
Life changed fast for the Stevensons. They were in and out of hospital for surgery and chemotherapy throughout the first year of Charlotte’s life. Esther quit her job as a secondary school modern languages teacher so she could look after Charlotte full time, while Phil, 40, continued to work and look after their other two children.
“It was hard for Lucy and Caleb,” says Esther. The siblings loved their younger sister, but her treatment took its toll. Caleb used to complain whenever Esther was planning a trip to London to visit the Royal Marsden.
“He can’t look at the pictures of how she was then, with no hair, really sickly and tiny,” says Esther.
Charlotte turned a corner two years ago after she joined an experimental trial for larotrectinib.
“Deciding your child is going on a drug trial is quite big, because it’s not your body,” says Esther. “It was an early stage trial so they couldn’t tell us an awful lot about it. There weren’t any other families we could talk to about their experiences. But we didn’t have any other options.”
Larotrectinib was made available on the NHS to hundreds of patients a year, mostly children and young
‘Parents take it for granted, but for us it was amazing to see her play and wolf food down’
people, when it was added to the Cancer Drugs Fund in April.
On Friday, Cancer Research UK announced a new programme, which will allow paediatric cancer patients to access personalised treatments quicker than ever before.
Doctors will be able to quickly perform biopsies on tumours and examine their genetic code. They’ll then use that information to determine the most appropriate treatments.
It means children and young people with cancer who have limited treatment options will get quick access to a clinical trial, which is testing multiple new drugs (like larotrectinib), and treatment combinations not previously available before.
Dr Lynley Marshall, a consultant at the Royal Marsden, who counts Charlotte among her patients, welcomes the new programme, all part of the “toolbox” to target rare paediatric cancer. “When childhood cancer recurs, the chances of a good outcome are much lower, so we know it’s really important to be looking at newer better treatments coming in,” she explains.
“[We need to] get the most up-todate molecular information. It could have developed cleverer mutations to try to escape the chemotherapy the patient has had already.”
Charlotte had surgery and very intensive chemotherapy when she was first treated for cancer. “Just as the disease came back again, this drug [larotrectinib] was available,” says Dr Marshall. “So she was one of the first in the UK to have access to this drug within the context of this clinical trial.
“The drug acts like a key into the lock almost, it very specifically targets the abnormality. It switches off the tumour growth.”
Charlotte’s larotrectinib is an orange medicine administered in two very small doses each day. Each bottle costs £5,000 and lasts about a month.
“The trial was instantly effective and she didn’t have the side effects she had before,” says Esther. “On chemotherapy, Charlotte didn’t gain weight for about six months. I was breaking my heart about it.
“She wanted to walk but didn’t have the strength in her legs. After the trial started, she became a happy, bubbly girl who was walking and talking.”
Now, Charlotte is a “blonde bombshell with a mass of curls” who loves to chat to nurses and play in the hospital games room.
“Parents take it for granted, but for us, it was amazing to see her play with other children, run around and wolf down food,” says Esther. “She’s vibrant, full of energy and a motormouth.”
Charlotte went into remission and her trial ended in January. But two months later, the tumour returned. In March, as the UK went into lockdown, the Royal Marsden couriered more of the drug to Belfast for her. By August, her tumour had gone.
“This drug is essential for dealing with Charlotte’s cancer. At the minute, she’s very well,” says Esther.
In the long term, larotrectinib will need to be approved for medical use before it is adopted by the NHS as a standard treatment. Given that it’s at such an early stage, the family don’t know what Charlotte’s care will look like in the future.
“It blows my mind that Charlotte has racked up such a hefty bill, but she’s my daughter and she’s worth more than that,” says Esther. “It’s priceless to us.”
Life for Charlotte hasn’t been normal, but she is blissfully unaware. When she sees a picture of herself with no hair and wired up to tubes, she says, “poor baby”. “She doesn’t realise it’s her,” says Esther.
Charlotte found shielding easy because it was like her life before lockdown but with the added fun of having her siblings and father around all the time. “She loved it,” says Esther. “We were all together, so it was playtime for her.”
Although Charlotte is well at the moment, her family still live month to month. At various times, Phil and Esther have struggled with feeling isolated and hopeless.
“We had to divide and conquer,” says Esther. “There were many days when Phil left for work and Charlotte was screaming the place down because she was so poorly.
“He got to leave, but he also felt detached from what was happening at the hospital. It impacts your relationship – you have to really trust each other and be gentle.”
The couple may be celebrating their daughter’s first day at nursery, but are still taking each step as it comes.
“Every 28 days, we see how things are,” says Esther. “[The trial] has provided a lot more stability than we ever had before, but it always feels like fragile stability.
“What the future holds for Charlotte I don’t 100 per cent know, but I do feel lucky for what we have right now.”