‘My daughter started nursery thanks to a cutting edge cancer drug trial’

Charlotte had surgery and very intensive chemotherapy “with lots of side effects” 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 and really shrinks them down.”

Charlotte’s larotrectinib is an orange medicine administered in two very small doses each day on a spoon. 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 she 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 food down,” says Esther. “She’s vibrant, full of energy and a motor mouth. She takes everything in her stride.”

Charlotte went into remission and her trial ended in January of this year. But two months after she stopped taking larotrectinib, the tumour returned. So 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 going forward.

“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 in the “really bad days”, 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 dad 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.”

Can We Cure Kids’ Cancer? airs on Channel 4 on September 9 at 10pm

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