Sophia’s stay on Koala Ward
3 Feb 2023, 4:11 p.m.
In 2015, Sophia received treatment at GOSH for a type of brain tumour called pilocytic astrocytoma. Now, almost 11 years old, she’s doing well. She loves cycling and plays in a football league with the local team. Here, her mum Kalonde – who recently joined the team at GOSH Charity – looks back at her daughter’s journey.
Arriving at GOSH in the early hours
It was 2am when Kalonde and her daughter Sophia, then four years old, arrived at GOSH for the first time.
Shortly before, Sophia had had an MRI at their local hospital. She'd been complaining of headaches, which would wake her up in the night, and earlier that day had lost her balance.
The MRI showed that Sophia had a large mass in her head; she needed to be transferred to GOSH for specialist care.
"I remember just feeling a sense of dread," Kalonde says of the time. "I thought ‘this is it for my little girl. I don't know how they can fix this.' Just because there was still so much unknown."
Sophia was taken to GOSH's Koala Ward, which cares for children and young people with neurological problems.
The team looking after Sophia decided the best way forward would be to operate, get the tumour out and then assess what was going on.
The consultant at GOSH sat down with Kalonde, to explain everything that would happen.
"Immediately there was a sense of ‘right, I'm a part of this. I can understand what's going on,’” Kalonde says.
“The consultant showed me a picture of the scan. She [said], ‘[the tumour] is big, but ... it's about the location …'
"She's [said], 'you're in the right place. It's been caught at a time that we can work with it.'
“I almost felt that that was the first point in hours that I started breathing. I had a sense of hope – because the consultant was so confident and had calmly explained to me what was going on.”
GOSH "didn't feel" like other hospitals
Because Sophia and Kalonde had arrived at GOSH so late, Kalonde didn’t have a chance to see Koala Ward until the following morning.
“... Everything was sort of alive,” she says. “I remember thinking ‘this doesn't feel like the hospitals I've been to before’. Kids were up and about."
Kalonde met members of the Play team. (Funded by GOSH Charity, the GOSH Play team provides a vital part of children and young people’s care at GOSH – helping them to make sense of their treatment and recovery through toys, activity and play.)
"They were just amazing," Kalonde says.
The Play team showed Sophia around the ward and organised games and activities for her.
“Sophia couldn't walk … but she just seemed happy," Kalonde recalls. "The team took over and gave me time to step back and not feel like ‘I'm going to sit here and worry about everything that's going on.’
"There was constant communication, too.”
Help from the Play team on surgery day
Surgery day for Sophia quickly arrived.
Kalonde’s mum, who had flown over from Canada as soon as she knew Sophia was unwell, stayed with Sophia the night before.
“I remember leaving to get to the hospital and I was on the train. I've never had a panic attack – but the train was delayed in the underground, and I just remember feeling constricted and like I couldn't breathe,” Kalonde says. “I thought, ‘I'm not going to make it on time, before she goes into surgery.’ I had to get off the train, compose myself and get back on.”
When Kalonde arrived at GOSH, consultant paediatric neurosurgeon Martin Tisdall met with her to talk her through the surgery.
“He explained everything that was going to happen,” Kalonde says. “I remember him drawing pictures and [saying] ‘this is my plan, this is the team...’. It just made me feel really comfortable.”
When it was time for Sophia to go down to theatre for surgery, she refused to wear scrubs.
“She started crying because they weren't a pretty dress,” Kalonde explains. “She asked: ‘Why would I have to wear those?’ She got really upset about it.
“The Play worker said: ‘Right. I'll take her aside. Let me have a chat with her and we'll come back when we're ready.’
“The Play team had initially said they were [there] for the comfort of the child the whole time … And at that point they totally took over. They went and got her teddy, and they dressed it up in little scrubs as well. That's when Sophia put on the scrubs.
“The Play worker said, 'Sophia, we can carry on playing as they get you to sleep and do whatever you have to do. We can put Bear to sleep as well and you'll both be fine.'
"And literally at that point, she just calmed down.”
Five hours later Sophia's surgery was over.
“I remember going down [to the theatre] and could hear Peppa Pig,” Kalonde says. “That was the first thing Sophia said when she woke up... ‘Is that Peppa Pig?’ They'd tried everything to make [it] feel like it was normal."
A bit of light in the darkest of moments
Sophia stayed on Koala Ward for two weeks after the operation. She was bed ridden initially, but still spent time with the Play team.
“Kids are just amazing, they’re so resilient. No matter what they're feeling they'll try and play,” Kalonde says.
The team later encouraged Sophia to walk around with them. They’d bring different aides and toys to encourage her and get her moving.
“I think Sophia definitely flourished during those two weeks because she had such a great team around her."
Kalonde adds that Sophia’s siblings enjoyed visiting her on the ward and were allowed to come as often they wanted.
“There were so many rooms that we could go into and play or just use as a private space for our family to be together."
Sophia's godmother visited from Germany, and Sophia has positive memories of playing on the interactive fishpond in the hospital entrance.
"Things like that were really positive.
“In the darkest moment, having that bit of light was absolutely amazing for us."
Support post surgery
Kalonde and Sophia left GOSH a lot earlier than anticipated.
"Initially they thought we'd be there for about three weeks, but after two weeks she was ready to go. We walked away. We were fortunate as a family," Kalonde says.
"The next part was the weight of understanding what it was [that Sophia had had] and would further treatment be needed.
“And even through that, I remember the doctor and Mr. Tisdall, the surgeon, were constantly communicating with us. They explained … you can talk to us at any time … We've got counsellors available for you to talk to if you're worried."
Sophia's team confirmed the type of brain tumour Sophia had had was pilocytic astrocytoma. These are usually slow growing and often cystic tumours that are most commonly situated within the cerebellum.
"They'd been able to take everything out during the surgery, so there was a very low risk that anything was left, and a low risk that further intervention would be needed," Kalonde says.
After her surgery, Sophia was put on the register for the next ten years for monitoring.
The family were told that some of the side effects from the surgery "might only show afterwards". When Sophia did experience some side effects, Kalonde felt the team at GOSH were always on hand to support.
"I've always been able to phone and say, look, this is happening, could we see the doctor, and we've been able to,” she says.
Now, almost 11 years old, Sophia continues to visit GOSH every year for an MRI and to see Mr. Tisdall.
“Initially, Sophia would have MRIs under general anaesthetic, which would be a bit of a longer process. But when she was seven, her doctor asked if she thought she could do the MRI on her own (without general anaesthetic).
“We talked through the process of what that might mean and then went to the MRI department. They were like: ‘Right, you get to choose whatever movie you want.’ That spoke to her."
The first time Sophia tried having an MRI on her own, she wasn't ready. But everyone was patient and, for the last three years, she's been having them without general anaesthetic.
"[The MRI is made in a] way that makes it as comfortable as it can be for a child," Kalonde says.
Today, Sophia's sisters argue over who will go to GOSH with her, because they know the facilities and the toys that are there, Kalonde says.
"They love the games, and they love helping Sophia to choose movies. Literally, as we prepare for an MRI, Sophia says ‘I need to think about what movie I'm going to choose when I get there’. She's so confident."
"A perfect sort of circle"
Today Sophia is thriving.
“She loves cycling and plays in a football league with the local team,” Kalonde says.
“It's just amazing to think that six years ago, she was a really different child. She's got a scar from the middle of the back of the head all the way down, which is like a battle scar."
Since leaving GOSH, the family have been involved in fundraising.
"We've been really involved as a community," she says. "You know, the church, choir, school rallying behind her..."
“I couldn't imagine what it would have been like had it not been for the facilities that GOSH had."
A few months ago Kalonde joined the team at GOSH Charity.
“To me it just feels like a perfect sort of circle; we were here a few years ago in very different circumstances,” she says.
“Being able to come back and work for GOSH Charity, after benefiting from [the hospital], is just amazing for me.”
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