Isla is lively, happy, playful and bubbly, and enjoys playing with her twin sister, Lottie and older brother, Finn. Like most girls her age, Isla loves being creative and adores anything pink, sparkly and cuddly!

She has also been fighting high-risk neuroblastoma since her first birthday.

Isla received extensive treatment in the UK, and everyone was delighted when her end of treatment scans showed no evidence of the disease.

But the prospect of neuroblastoma coming back is high for children like Isla, and if it does, there’s a less than 1 in 10 chance of survival. So, Isla’s parents chose a treatment in New York to try and reduce the chances of their daughter relapsing.

They launched a fundraising campaign with Solving Kids’ Cancer to raise £155,000 for this clinical trial, with the aim of keeping her free from disease.

Support for Isla’s campaign was incredible. Thanks to your kindness and generosity, she travelled to New York for the first stage in March 2018 and completed the treatment in March 2019.

Any funds raised above what’s needed for Isla will be held for her with Solving Kids’ Cancer for a period of five years. We really hope that Isla will not need extra funds during this time, but if she does, they’ll be available. If not, they’ll be used to help other children and families affected by neuroblastoma through our work.

Isla’s parents, Anna and Rick say: “Whilst we live in fear of this monster of a disease, we can’t have any regrets or ask ourselves ‘what if,’ we couldn’t leave any stone unturned. We are eternally grateful and will never forget the lengths people have gone to for Isla.”

Isla’s story

Inseparable, Isla and her twin sister, Lottie, have a close bond. But in the summer of 2016, while Lottie was starting to run 

around, Isla seemed lethargic in comparison. Anna and Rick recall how Isla just wanted to sleep. They took her to the doctor’s and were told that Isla most likely had a viral infection.

But when a lump became visible on her face, near her jaw, Isla’s parents took her back to the local GP. She was diagnosed with mumps. Rick and Anna were warned that it was highly contagious and that it was likely that her brother and sister would also get it. When they didn’t, and the mass kept growing, they took Isla back to the GP. It was the day before Isla and Lottie’s 1st birthday.

“Things escalated very quickly,” say Rick and Anna. “The doctor suspected an infection and advised us to take Isla to Watford General Hospital.”

At the hospital, Isla underwent various scans and the following day, they were given the devastating news that the mass on Isla’s face was, in fact, a tumour. They were taken by ambulance to Great Ormond Street Hospital.

“We were numb with shock. Our lives had changed in a heartbeat. One day we were living normal lives then literally overnight, everything was different.”

On arrival to Great Ormond Street Hospital, the news got worse. They were told that Isla had stage 4 high-risk neuroblastoma and that the situation was serious.

High-risk neuroblastoma is a particularly aggressive form of the disease, which is the most common cancer outside the brain in children under 5 years of age.

Scans and tests revealed that Isla had four tumours; the largest of which was 9cm long in her adrenal gland, resting on her kidney. She also had a tumour on her face, one in her ribs and a small one on her leg.

Isla’s parents were told by the medical team that Isla’s chance of survival was just 50%. They say: “For any parent, this is a horrendous number to hear.”

Isla’s chemotherapy regime began the next day and whilst the side effects were severe, by January 2017, three of her tumours had disappeared. The tumour nearest her kidney had shrunk enough for surgery to go ahead to try to remove what was left. After a seven-hour operation, Rick and Anna were delighted to hear that the entire tumour had been removed.

Although removal of the tumour increased Isla’s chance of survival, more intensive treatment to complete the treatment plan followed soon after recovering from her operation. This included high dose chemotherapy with a stem cell transplant, which Isla’s parents describe as “horrendous”. Isla broke her leg twice because the treatment left her bones so weak. Isla also endured 14 sessions of radiotherapy under a general anaesthetic over a 3-week period. She then went on to receive six months of immunotherapy.

The impact of Isla’s diagnosis has been tough on all the family – especially Isla’s siblings. While Finn enjoys rough and tumble play with Lottie, he is aware that Isla is unwell so is very gentle with her. For Lottie, spending so much time apart from Isla has been difficult. She would crawl around looking for her twin everywhere, and as a result, has formed a strong bond with Finn.

“Despite her aggressive treatment, Isla continues to smile and is an inspiration to everyone. Cancer shouldn’t happen to children. They shouldn’t know the word ‘cancer’ but sadly they do,” say Rick and Anna.

Travelling to America

Following immunotherapy, Isla’s parents decided that the best treatment for their little girl would be the Bivalent Vaccine clinical trial at Memorial Sloan-Kettering Cancer Center in New York.

Their successful appeal for £155,000 meant the family travelled in March 2018 for the first stage of treatment, and returned four more times, with Isla completing it in March 2019.

She will continue to be monitored on the NHS as normal, with scans continuing on a private patient basis to fulfil the criteria for the Bivalent Vaccine clinical trial.

You can follow and share Isla’s story through her Facebook page.

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