Parents' heartbreak as daughter given months to live after brave brain cancer battle

Adeline, now 18 months, was diagnosed with a rare and aggressive brain tumour at only three months while her family lived in Dubai

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A father has spoken of his devastation at learning his toddler daughter has only months to live after a long battle with brain cancer.

Rob Evans, 49, whose daughter Adeline is now 18 months old, said he and his wife, Katie, 33, are heartbroken to realise they will not get their “happily-ever-after ending” after tests last week showed her tumour had regrown.

Adeline was diagnosed with the condition when she was only 3 months old, when the family were living in Dubai.

Ms Evans and Adeline moved back to the UK for treatment, where she underwent operations and two rounds of chemotherapy, the second of which appeared to be working.

It is just devastating that it isn't a happily-ever-after ending
Rob Evans

MRI scans over the past six months had shown that the tumour was stable.

But a regular scan last week revealed the cancer, which had been removed from its original site, had regrown and spread to other areas of the brain.

Family heartbroken after 15-month ordeal

“There are no other treatment options now so she has a couple of months at best to live,” said Mr Evans, who continued to maintain part of his employment in the UAE after her diagnosis, going between Dubai and the UK for some time.

“It is just devastating that it isn't a happily-ever-after ending.”

Mr Evans, who shares updates on his daughter’s condition on the Brits in Dubai Facebook page, now plans to relocate permanently back to the UK, where he is currently with his daughter – and he aims to maximise his time left with Adeline.

“I will have to come back to Dubai for a week or so as I need to close everything down," he said. "I finish with my work at the end of the month and hand back my apartment in early March, so I have no choice but to come back for a bit.

“I need to sell my car and furniture, etc.

“I will try to get everything set up from here to make it as easy as possible and ensure I'm away from them [his family] for as little time as possible. It’s a nightmare.”

Adeline, who was conceived through IVF after the couple struggled for five years to have a child, was diagnosed with brain cancer after she became lethargic and started vomiting. Her condition worsened over a day and her fontanelle, the soft spot on the top of a baby’s head, began to bulge.

“On the NHS website it says to ring an ambulance if that happens,” said Mr Evans.

Adeline's eye began to droop and she was sent for an MRI scan, which revealed a huge tumour.

“It was 8.5 centimetres by 9cm by 2cm,” her dad said.

“It was a massive tumour. They told us we had two options. We could either let it take its course and let her go. Or they could try to operate.

"But they didn’t think she would survive the operation and even if she did survive, they said it was such a big and aggressive tumour that it [surgery] would only extend her life by a couple of months. It was like we had to try.”

The surgeon managed to remove the tumour, and due to a mix-up with health insurance, they could not immediately proceed to chemotherapy. So Adeline and her mother returned to the UK to resume treatment, which included more surgery.

The first round of chemotherapy failed. But the second appeared to be working. She coped with the treatment well, bouncing back between treatments, despite being poorly while receiving it.

After two positive scans, a third revealed the regrowth.

Doctors had said her cancer was not curable, but treatable. But the latest news means there is not much more they can do for her. The cancer she has is particularly aggressive and treatment options are limited because of her age.

“When you see on the TV or read about people or children undergoing chemo, you see them looking poorly and you realise it’s tough. But when you actually live through it, it’s just incredible," said Mr Evans.

“Your whole life is controlled not just by the chemotherapy but everything that comes along with it. In between hospital visits, Adeline used to have blood tests twice a week.

“She had a feeding tube in her nose. We learnt how to fit it but if that came out it meant a trip to hospital. While she was undergoing chemo, because her immune system was suppressed, as soon as she spiked in a temperature she had to go into hospital for two days to have antibiotics and blood tests.”

That was particularly hard during the pandemic because everyone they meet outside their home is a risk to Adeline.

Mr Evans will return to Dubai at the end of the month to pack up his life in the emirate.

“Unfortunately the Dubai dream is over for now,” he said.

Mr Evans said he is bringing some things back with him to the UK, but has to sell a lot of his possessions to be able to get back to Adeline quicker.

“I have someone already who is interested in lots of it and my friend can take care of it all for me,” he said.

“I'm very lucky to have met some great people in the four-and-a-half years I have been there.”

Updated: February 15, 2022, 5:09 AM