'All these things restore her childhood': Meet GOSH patient Saint-Hallie
25 Jun 2024, 7:57 a.m.
In March, a few months before she was due to start nursery, Saint-Hallie was diagnosed with a type of eye cancer called retinoblastoma. Since then, she’s been having treatment at Great Ormond Street Hospital (GOSH).
The journey so far has been challenging, with Saint-Hallie spending time away from her siblings and mum, as well as experiencing tough side effects during the first round of chemotherapy. But, for her dad, Jaden, the child-friendly environment and supportive staff at GOSH have been a source of solace.
Arriving at GOSH
“Saint-Hallie is missing spending time with her siblings,” Jaden says. “At home, they would be jumping on the sofa, playing in the garden, and eating strawberries together – they love them!
"Her sister is only one year older, so they play together a lot. They love Ms Rachel, a children’s programme on YouTube. They watch it together and sing songs, learn to count, and recognise colours.”
It was in November last year that Jaden and Saint-Hallie's mum, Jennifer, noticed something was different about their daughter’s right eye. “It was shiny, sparkly, a bit golden,” Jaden recalls. “We thought it was beautiful, that she was a bit special to have eyes that were different colours.”
After deciding to get it checked out, they were referred to a hospital where they were shocked to learn she had a cancerous tumour.
Saint-Hallie had to have her eye removed, so the cancer didn’t spread to the left eye, and she was fitted with a false eye. After the operation, Jaden and Jennifer were told she also needed chemotherapy. That’s when she was transferred to GOSH.
Eighteen-month-old Saint-Hallie is now halfway through her treatment.
Facing chemotherapy side effects
Saint-Hallie currently has four days of chemo every three weeks.
“We stay at GOSH for those days, and, if she is not well, we stay longer,” Jaden explains.
“The first time, I kept asking staff, ‘When will we go home?’ When they said ‘we’re not sure’ I couldn’t understand. But then the chemo started, and she got side effects quickly. Her hair fell out just a week after the first chemo.
“Some of the treatment makes her vomit a lot, so she’s on lots of anti-sickness medication. She has mouth ulcers and stomach pains and refuses to eat or drink. We stayed on Elephant Ward for two weeks the first time, then went home for a while and came back for the next cycle.
“When we go home, we’re provided with special milk and a feeding pump [to use with her nasogastric tube]. We feed her four times a day and it takes two hours each time – we had to slow it down, so she doesn’t vomit. She can only have this milk, and sterilised water, to prevent her getting an infection.
“The other thing is, the chemo flushes out in her wee. It’s so acidic she gets sores on her legs and her skin starts falling off.
“I can feel it burning when I change her nappy, so I have to wear gloves. I need to keep changing her nappy and applying cream to stop the sores, so I often have to wake up in the night to change her.”
Thankfully, the second round of chemotherapy was better than the first, and Jaden hopes it will be easier from now on.
He’s aware, though, that there’s a possibility Saint-Hallie could experience some long-term side effects as well as short ones.
“There’s a risk that chemo might cause hearing loss, she’s being tested for that, and that her fertility may be affected,” he explains.
Making hospital a little bit easier
Jaden stays with Saint-Hallie in hospital, while Jennifer stays at home with their two other children.
“I feel very supported here. The staff have humanity, and money can’t buy that,” he says. “The nurses have made me want to become a nurse. I’m learning a lot, they involve me in her care, so when we go home, she will be safe.”
At home, Saint-Hallie loves playing – or maybe sometimes ‘thumping’ – the keyboard. It’s perhaps no surprise, then, that at GOSH she recently enjoyed a visit from the hospital’s music therapist.
“She was sitting really close, and Saint-Hallie started strumming the guitar, interacting with her,” Jaden recalls. “I found it very emotional.”
From the music therapy to the artwork to the Play team, for Jaden “everything at GOSH is about children”.
“Our room looks like a nursery with lots of pictures on the walls,” he explains. “Even the animal paintings on the ward of lions, elephants and giraffes [the names of the three oncology wards at GOSH] give a bit of comfort.
“The Play team come in to give her toys – she likes the electric train and sensory toys that light up and make noises – and she loves the sensory room in the playroom.
“There are other children here to play with, there are even electric cars in the corridor – all this restores her childhood."
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