THE family of a Cwmbran boy with a rare brain tumour say they feel left “in limbo” after being told they need to wait until February to find out what treatments are available.
Olivier Roberts, five, was diagnosed with diffuse intrinsic pontine glioma (DIPG) in August last year. Due to the tumour’s position in the brain stem, it is inoperable.
Following the end of his radiotherapy in November, Olivier’s symptoms had “improved significantly” and he even returned to school, but after Christmas, his parents noticed a deterioration in his balance and ability to walk – to the extent that he had difficulty standing up without assistance.
Olivier with his dad Richard in France over Christmas
An MRI scan on December 23 found that, while the tumour had not spread to other parts of Olivier’s brain, it had seemed to have grown.
However, Richard Roberts, Olivier’s dad, said experts have said this is likely to be a case of ‘pseudo-progression’, and the size of the active tumour had actually decreased.
“This came as a huge relief to us,” he said. “I guess a way of explaining it would be that the radiotherapy has been successful in killing parts of the tumour but the dead or dying cells that have been left behind give the appearance of an increased abnormal area.
“The additional pressure or inflammation in the brain caused by the dead cells, produces symptoms that are similar to the symptoms associated with progression of the tumour.”
However, one of the most promising treatments - which must carried out at a facility in in New York - needs to be started within 14 weeks of radiotherapy ending – which would be around mid-February.
But in cases involving ‘pseudo-progression’, a new MRI scan is required before being accepted on to the trial, to see if the treatment will be possible.
“What their trial involves is a surgery where they put a tube into the brain and would insert medicine directly into the tumour area,” said Mr Roberts.
“Part of the difficulty is the brain has a blood brain barrier which filters and stops any bad things going into the brain - but it also filters out any medicine.
“However, with the ‘pseudo-progression’, a lot of the area around the tumour is entirely dead cells.
“This makes it incredibly difficult for any surgeon to know exactly where to operate.
“So until there’s a clearer picture, it’s not possible to do it.”
The earliest that Olivier can have another MRI scan is early February, leaving his family in limbo until he gets those results back.
“It’s really hard having to wait and feeling like we can’t do anything to help him,” said Mr Roberts. “We are in limbo and there’s nothing we can do. It’s completely out of our hands.
“When we were speaking to people and fundraising we were feeling like we’re helping him, now we’re just waiting.
“It’s so frustrating that there’s nothing available today.”
If the scan shows the dead cells haven’t cleared enough, or if Olivier cannot get on the New York trial, Mr Roberts said his son would need a biopsy to determine if it was possible to get onto a different trial – either in the US or Europe.
This trial would be “on progression” – having treatment while the tumour is growing, after the post-radiotherapy treatment stage.
Many of those trials require a certain genetic mutation for the treatment to work though, but Mr Roberts said they had been told “around 80 per cent” of children have this.
“We’re just hoping and waiting to see what the scan shows,” said Mr Roberts. “If it’s good news, we’ll do everything we can to do this trial in New York, and if not, we’ll be preparing for a biopsy.”
The family visited mum Marina’s family in France over the Christmas and New Year period, where they also met with an expert – Dr Jacques Grill, at the Gustave Roussy Cancer Institute – to discuss Olivier’s MRI results.
“Since being home from France, Olivier has improved somewhat,” said Mr Roberts.
“It was so, so hard seeing his condition worsen and we were terrified as to what the next steps might be.
“The likelihood is that Olivier's symptoms should improve again over the next few weeks months.
“Other than that, he just wants to play and have fun.
“We’ve spent the last week building a LEGO set we picked up in Disneyland.”
A fundraiser has been set up to support Olivier’s family with the treatment costs. So far, the fundraiser stands at more than £37,000, with the total amount raised now at around £55,000.
“We are so very grateful for everybody’s help,” said Mr Roberts. “It’s so kind of people in the community and people who don’t know us.”
“The money that has been raised so far has helped us to obtain a second opinion from a specialist DIPG centre in Zurich, to pay for our recent consultation with Dr Grill in Paris and to also meet with a specialist doctor in the UK.”
You can find out more on the 'Olivier - Our Golden Boy' Facebook page, or donate at gofundme.com/f/treatment-for-olivier-our-golden-boy
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