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proton beam therapy
For around 18 months, Kent schoolgirl Gracie Gosling had been experiencing intermittent headaches, which had been investigated to no avail – until February 2019, when her legs suddenly gave way on the way to school.
Taken to the hospital by her worried parents, bank worker Carly, 39, and Justin, 41, who works for a law firm, a scan revealed a worrying mass on her brain – later confirmed to be a tumor pressing on her pituitary gland, which is responsible for hormone production.
During the eight-hour operation that followed to remove the tumor, medics at south London's King's College Hospital also discovered a cyst which, shockingly, could have become fatal within days.
Justin explained: “The type of tumor Gracie had is very slow-growing. People can sometimes have them for years before they start displaying symptoms.
“So, actually, it was the cyst that had caused her headaches, that made her collapse that day and led us to the diagnosis. Who knows how long it would have been otherwise?"
Justin added: “I remember a doctor saying that it was very close to becoming life-threatening, and that if we'd left it another 48 hours she may have just fallen into a deep sleep, and not woken up."
After surgery, Gracie was referred for a pioneering treatment called proton beam therapy.
The cutting edge radiotherapy uses a beam of protons, or positively charged particles, rather than high energy x-rays to target tumors precisely and reduce the damage to healthy surrounding tissue.
And, keen to reassure other youngsters facing the same treatment and to raise awareness of it in general, in a remarkably courageous move, Gracie decided to document her journey using YouTube.
Now, not only has she been told she is stable by doctors, but her sterling efforts have seen her land her dream role as a BAFTA Kids Young Presenter, taking to the red carpet to interview scores of celebrities.
Speaking with pride of his daughter's bravery and subsequent role with the British Academy of Film and Television Arts (BAFTA), Justin said: “There's no doubt that 2019 has been the worst year of our lives, as no child should have to go through what Gracie did. But what she's gone on to do since is incredible and we are so proud."
An only child, Gracie had been complaining of headaches for around 18 months in the lead-up to her diagnosis.
Thinking her eyesight could be to blame, she was taken to the opticians and even visited the Moorfields Eye Unit of Darent Valley Hospital, Kent, England – but every test came back clear.
“Nobody could work it out. We felt as if there was nothing else we could do," said Justin.
Things came to a head in February 2019, when she was on her way to school with Carly and suddenly collapsed, as her legs gave way.
Justin recalled: “Carly phoned me to tell me what had happened and said she was taking Gracie to our local hospital. I went to meet them and as soon as I got there we were transferred to a larger hospital, so she could have an MRI scan.
“It felt like we were there for hours. All around us, the other patients were coming and going, whereas we could see all these doctors gathering, waiting to talk to us."
That evening, Gracie stayed with a doctor while Carly and Justin were taken into a private room and given unthinkable news – that the scan had revealed a mass on their little girl's brain. Believed to be a tumor, she would need surgery to remove it .
While medics offered to explain things to Gracie, her parents felt it ought to come from them.
“I was in so much shock that I almost collapsed. I had no idea what to think – I just knew it was serious," Justin continued. “We have always been very open with Gracie, so wanted to tell her ourselves. We explained that she would need some surgery and that it was really important."
He added: “There were a few tears, but then she picked herself back up. Throughout everything, she's never stopped smiling."
Next, the family were transferred to King's College Hospital, where Gracie had an eight-hour operation.
“Her surgeon and his team were incredible. I told them as much, and they said Gracie was the amazing one, not them, but I can never thank them enough," said Justin. “The wait was agony, but we kept telling ourselves that the longer she was down there, the more of the mass they were managing to cut away."
After Gracie's operation, medics confirmed that she did indeed have a tumor known as a craniopharyngioma which, according to the NHS, is benign.
There are around 30 cases each year in UK children, with symptoms including headaches, nausea, disturbed sleep patterns, behavioral changes, slow growth, and increased sensitivity to cold or heat.
In Gracie's case, surgeons managed to remove around 75 percent of the tumor – as well as the cyst – but, due to its precarious position, could not reach the rest.
What is a craniopharyngioma?
- Craniopharyngiomas are benign brain tumors.
- They can affect children and adults.
- Craniopharyngiomas usually grow near the base of the brain, just above the pituitary gland. The pituitary gland makes hormones that control important body functions.
- Craniopharyngiomas do not usually spread.
- Symptoms can develop suddenly, which means that you feel unwell quickly or they can develop more slowly.
“Gracie coming round after the operation was one of the worst parts of it all," said Justin. “She was really out of it – like she wasn't really there. She didn't even properly recognize Carly and I."
After a short break, allowing her to recover from surgery, in May 2019 Gracie began proton beam therapy at The Christie Hospital in Manchester – one of the only centers in the UK currently offering it.
For six weeks, she received daily treatment – deciding as the end approached to post a session to YouTube, hoping it would give other patients an idea of what to expect, while reassuring them not to be afraid.
“Gracie loves YouTube. She's always making little videos, and she noticed that there wasn't a huge amount out there about proton beam therapy and what it was – especially through the eyes of someone her age," said Justin.
“She thought documenting her own treatment would help show other children facing it that it isn't as scary as they think, and would promote it in general as it's such an amazing treatment.
“The staff at The Christie were so supportive and the video has even been shown since at a conference about proton beam therapy to hundreds of doctors, who absolutely loved it."
Remarkably, throughout her ordeal, Gracie continued to study for her SAT exams, sitting them two days after treatment ended and passing with flying colors – even winning an award for outstanding achievement.
But this was not her only exciting accolade as, in November, she was named BAFTA Kids Young Presenter for 2019 and will be presenting at events throughout the next year.
Then, just weeks later, her favorite magazine, Shout, recognized her as part of their first ever Feel Good Awards, introduced in the December issue to celebrate positivity and bravery.
Justin explained: “Gracie absolutely loves Shout, as it's a really positive magazine aimed at young people like her.
“They often feature some of her favorite YouTubers, so we wrote to them to see if they were interested in featuring her story to raise awareness.
“They went one better and honored her with the award, introducing a category especially for her."
Justin continued: “Then, for BAFTA, she had to record a video entry on the topic of 'What I care about.'
“In hers, she spoke about seeing other young patients while she was having treatment. She would bring them toys and managed to make friends with a couple of them. We were absolutely amazed when she won. It's a dream come true for her."
Gracie has so far hit the red carpet in central London to interview celebrities including McFly's Danny Jones, and presented an award alongside Stacey Solomon.
She will attend a number of other events for BAFTA throughout 2020 and has also published a free-to-download guide on how to get into vlogging for other young people.
Now, though a small portion of the tumor remains, Gracie is stable and has scans every three months to monitor her progress – all of which to date have shown no signs of regrowth.
“Words can't even express how proud we are of her," said Justin. “She really is a superstar."
Gracie has recently been honored by Shout magazine as part of the first ever 'Feel Good Awards' celebrating brands, people and products that are influential and important in readers lives. The 'Shout Squad' award was created just for her, as a special acknowledgement of her amazing journey.