Chloë Venton from Swindon has been diagnosed with Ewing's Sarcoma, a form of bone cancer

Exactly a year ago today Chloë Venton, now 16, discovered she would face a lifelong battle against the disease after being diagnosed with Ewing Sarcoma, a type of bone cancer.

The home-schooled youngster, who lives with mum Joanna, dad Gary and brothers, Jack, 14, and Ryan, 13, in Park South, said: “The consultant who treated me said it is the kind of cancer which is seen perhaps once in a medical career.”

Mum Joanne added: “I just went numb at the diagnosis,”

“It was just the worst nightmare. You never believe it will happen to your family. You never expect that will be the answer. I’d never even heard of that cancer before.”

Chloë has now finished chemotherapy, however the family are still living with uncertainty.

“The next six to nine months are going to be the toughest, when we find out if the treatment has worked,” said Gary.

Chloë will have scans every three months for the next two years to monitor if the tumour is still growing or if a secondary tumour develops. Gradually these will then be spread out over the next ten years.

Joanne added: “We’re just keeping our fingers crossed that it doesn’t grow. That would be the best thing really, because you can’t ever remove it. This will be something she will always live with.”

The initial signs of something was pain in Chloë’s lower back.

“The doctors kept saying it was a pulled muscle, but I knew it wasn’t because she would wake up in the night with the pain,” said Joanne. Chloë also noticed some numbness which was gradually spreading.

After her mum pushed for a further diagnosis, Chloë had an MRI at the Great Western Hospital and was then sent to the John Radcliffe hospital in Oxford. The sarcoma was identified at the bottom of Chloë spine, in the nerve sac.

Its aggressive nature meant chemotherapy began immediately, before the doctors had the full picture.

Gary said: “It was a really bizarre time, everything just happened so quickly.”

Chloë spent nearly a month in hospital with Joanne before first coming home, while her father and brothers made the 72 mile round trip every day to visit.

Treatment included chemotherapy every two weeks with blood transfusions in between to counteract the affects on the rest of her body.

As the disease is so rare, there hasn’t been the peer-to peer support available from others who are in the same situation.

“We haven’t been able to speak to other people who have also gone through this because it is so rare,” said Chloë. “At times it has been quite hard. You can feel like you’re really on your own.” she added.

“You just get on with it though.We’re a very supportive family though, and look after each other,” said Gary.

“It’s the kind of thing that if you catch it early then you have a higher chance of getting better,” said Joanne. This is why the family have started a campaign to increase awareness of the disease and raise money for Bone Cancer Research Trust, to help stop other families from going through their experience.

“This is Chloë’s wish, to raise awareness. If there had been more awareness, we would have got our diagnosis sooner,” Joanne said.

The family raised over £480 whilst collecting at Morrisons in Dorcan on Friday May 3, selling BCRT pin badges and campaign wristbands.

“So many people stopped to say, ‘wow we’d never even heard of this’,”said Joanne.

“Chloe was really sore and tired by the end of the day but was determined to stay as long as possible. Just to raise that awareness of the disease,” she added.

Gary, Jack and Ryan also plan to do the Tough Mudder in aid of the charity. “I am looking forward to it, for what it does,” said Gary. “Raising awareness and getting the message out there. It was the boys who really wanted to get involved in something they could do to help.”

“Ewing’s sarcoma is an incredibly rare cancer, said Dr Esther Blanco, a Paediatric Oncology Consultant at the John Radcliff. “Most of the time it originates from the bones, although a small percentage of cases will arise in soft tissue. It is mostly seen in young people, teenagers and young adults, between roughly 10-25 years old.”

She added: “We don’t know why young people develop this cancer. There isn’t anything they have done and we don’t have any way of preventing it. It is just something that happens unfortunately.”

It is thought there is a relationship between periods of rapid bone growth in adolescents and the development of primary bone cancers like Ewing’s sarcoma.

The nature of the cancer meant Chloë was unable to have surgery, and radiotherapy would potentially harm her other organs. Instead she was sent to the UF Health Proton Therapy Institute in Jacksonville, America, for proton beam therapy.

Dr Esther Blanco said: “This treatment allows you to spare the tissues that are close to the tumour, so healthy tissue nearby receives less radiation. Protons are used when you want to treat an area where there are vital organs close to the tumour, and by giving protons you reduce the radiation affecting these organs.” The family spent over two months away from friends and family across Christmas, New Year and even Chloë’s sixteenth birthday.

“It was strange being over there without much contact from family,” said Gary. “We could ring them but that was it. It was hard because we always do something family-orientated at that time of year, but we couldn’t.

“We had wanted to do a big party for Chloë’s sixteenth, but obviously weren’t able to,” he added. The hospital did arrange for the family to go to Disney Land.“It’s something they give you to do when you’re in a different county away from all your family, just to try and make it a bit easier.

“It was nice to get out for a couple of days all together as a family and see her smiling,” said Gary.

Whilst in hospital, having Chemotherapy Chloë was able to sit her English and Maths and Spanish, GCSEs.

“She was so determined that she wanted to get it done. She’s like that once she sets her mind to something she’s determined to do it,” said Gary.

The family are at New College today, which Chloe also attends for pre-16 sessions, holding a bake sale from 9am until mid-afternoon. “We want to thank everyone who’s supported us – strangers, people who have donated, people who’ve stopped and asked questions about the cancer – everybody really, who have been so kind,” said Gary. “We’re very grateful for all the support.”