Proton therapy saved our girl's sight

WHEN Myla Adams’ parents Tony and Stephanie noticed a swelling in her right eye in June last year they assumed it was a minor eye infection that a course of antibiotics would soon clear up.

Myla has been an inspiration to her parents

 

But after four trips to their GP in Drighlington, Leeds and with the swelling showing no signs of going away, the two-year-old toddler was referred to an eye specialist.

The doctor immediately suspected that the swelling was more sinister than an infection and ordered an MRI scan, telling Stephanie, 26, that he thought the swelling was cancerous.

He was right. On July 4 Myla was diagnosed with rhabdomyosarcoma, a rare soft tissue cancer.

“We got the shock of our lives,” says Tony, 29, an electrician. “We honestly thought it was just some sort of infection.”

Rhabdomyosarcoma (more commonly known as RMS) is a sarcoma, a rare type of cancer that develops in the supporting tissues of the body, such as bone, muscle or cartilage.

RMS is the most common of the soft tissue sarcomas in children. Tumours develop from muscle or fibrous tissue and can grow in any part of the body but are most commonly found in the head and neck, the bladder or genital area.

Fewer than 60 children are diagnosed with rhabdomyosarcoma in the UK each year and most of them are below the age of 10.

In Myla’s case the tumour was lodged in the muscle behind her right eye. Although tests showed that the cancer had not spread, it had grown to such an extent that her eye was being distorted and her cheek appeared swollen.

 

Myla had to have several rounds of chemotherapy

 

Doctors were concerned about the pressure it was placing on Myla’s optic nerve, posing the risk that she could lose her sight.

Treatment began the next day when Myla was started on an intense chemotherapy regimen.

Within three weeks her long hair had fallen out and she became very sick and listless as a side effect of the treatment.

Myla had always been such a little whirlwind, always full of laughter

“It was heartbreaking to watch,” says Tony. “Myla had always been such a little whirlwind, always full of laughter and she loved putting on little performances for us to watch.

“She’d always been so full of confidence. The treatment made her a shadow of her former self. She was very sick and to see her hair coming out in clumps was heartbreaking. She was so weak that she could barely walk a few steps without falling.”

 

Ashya King, who sparked an international manhunt last year, also had proton therapy

In September. a scan showed that Myla had responded well to chemotherapy and it was decided that proton therapy would be a good option to eradicate the rest of the tumour.

Proton beam therapy is a type of radiotherapy that uses high energy beams to destroy cancerous cells. It is more focused than traditional radiation therapy which fires beams at the whole body and can cause significant damage to patients.

Only 50 proton beam units are in use worldwide and treatment can cost up to £100,000.

Some proton treatments are available on the NHS but only on specific parts of the body.

A similar device was used to treat Ashya King, the six-year-old boy who sparked an international manhunt when he disappeared from Southampton General Hospital in 2014.

His parents had taken him for proton therapy in Prague for a brain tumour. Within days of her consultant making an application, funding for Myla’s treatment in the US was approved.

 

The University of Florida Proton Therapy Institute

 

The family left the UK on September 11 for the University of Florida Proton Therapy Institute in Jacksonville.

Stephanie had to return home two weeks later because she was so close to her due date with the couple’s second child.

“That was devastating,” says Tony. “Getting the news about Myla’s illness was bad enough but being separated was torture.

“We’d got through the tough times by staying together as a family but it was the only thing Stephanie could do with our new baby due so soon. She had to go back to the UK for the birth.

“We’d go on Skype every day so Stephanie could see Myla, and speak to each other on the phone whenever we could. It was so hard.”

The proton therapy was difficult for Myla. A special mask had to be made for her to keep her head completely still and she was given a general anaesthetic for each session of which she had 27 over an eight-week period.

Although Myla’s treatment finished on October 28, Myla and Tony couldn’t get a flight home until November 3, two days after Stephanie’s due date.

In the end, their son Mackson was born on November 4 with Tony missing the birth by one hour as their flight had landed in Manchester that morning and he and Myla were stuck in traffic.

“Steph and I have never been so happy to see each other, and seeing my baby boy there was just the welcome-home present Myla and I needed,” says Tony.

"Poor Steph had to go into the hospital alone but we left as a family of four and that’s all that matters.”

Myla has been recovering steadily in-between bouts of chemotherapy

 

Back at home, Myla’s chemo treatment continued until December 21. A scan is due to take place this Friday to find out whether the treatment has been successful.

Tony says: “We just need to keep everything crossed but the doctors are hopeful.

“A scan before we went to the US for the proton treatment showed that almost all of Myla’s tumour had gone, thanks to the chemotherapy. It’s hoped that the proton treatment will have got rid of it completely.

“Little by little we’re getting our Myla back. She has periods where she peps up a little between treatments and it’s so good to see her energy levels up again.

“She’s amazed us at just how resilient she is. At the start of last summer she was only two-and-a-half and we had no idea anything was wrong. Six months later we’ve been through so much and even been halfway around the world for treatment, but we’re beginning to see light at the end of the tunnel – 2016 can only get better.”