'To hear our baby has cancer is world-shattering'

Within hours of visiting the doctor about a small lump on the side of their one-year-old daughter's head, James and Sophie said their world was "shattered".

In May, after a CT scan found a large tumour, Ottilie was diagnosed with high-risk neuroblastoma - a rare childhood cancer - which had already spread to her skull, spine and bone marrow.

Her father James, 41, said their "sassy", "happy", and "beautiful" girl now faced a gruelling 12 to 18 months of treatment including chemotherapy, surgery, blood transfusions, stem cell transplant, radiotherapy and immunotherapy.

Ottilie's family, from Derbyshire, are raising £300,000 for future and potentially life-saving treatment in the US.

James, from Hilton, said they had been told with Ottilie's treatment plan, there was a 30% to 50% survival rate.

According to Neuroblastoma UK, children with high-risk neuroblastoma have a 50% chance of relapse.

At the Memorial Sloan Kettering Cancer Center, in New York, a vaccine trial is taking place to help prevent relapse, said James.

Her family hope Ottilie will go to the US for a series of these vaccines after her treatment in the UK.

James said after Sophie took daughter Ottilie to see the GP on 8 May, the doctor immediately referred their daughter to Derby for a CT scan.

He added: "Within half an hour, we were pulled into this private room... and [the specialist] told us that Ottilie had a large tumour growing on the side of her head.

"This was just a complete bolt out of the blue for a little girl who was healthy and hadn't had any pains or signs and symptoms, to be told she had a large tumour in her head, which is just world-shattering."

They were then "blue-lighted" over to a specialist unit at Nottingham's Queen's Medical Centre.

From the following Monday, he said "we had one of the worst weeks we could ever imagine".

"Ottilie was put through so many tests and procedures and she had five general anesthetics in five days, MRI scans, surgery to her head for a biopsy," he added. "The oncologist gave us the horrendous news that it was cancer."

He said they were told it had started in her kidney and spread around her body, through bone marrow into her spine and head.

"At this point, obviously, we were just in pieces to have all this information thrown at us when just two days earlier we were at home living a normal, happy life," he said.

James added Ottilie's "emergency intensive chemotherapy" began on 21 May.

She is now undergoing a 70-day phase, in which she will have three to four days of chemotherapy, then three to four days rest, continually.

Sophie said Ottilie currently seemed "really well", which made "it harder to get in your head because she's up and running around, laughing and playing... but obviously, she is really poorly".

"We've got Archie as well, who's five, and so you don't have the time really to fall apart. You have to have it together for the kids," she said.

She added she had "a bit of disbelief maybe still, hoping that they've [the doctors] got it wrong".

A fundraising page, which was started less than a week ago, has made more than £50,000 so far.

The 34-year-old said people had been "amazing... [we're] just really grateful and thankful".

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