A mother from Banstead felt ‘like the walls just came crashing in’ when she discovered her daughter had 25 per cent survival rate from one of the rarest forms of cancer.

Beth Semikin, 23, found out she had epithelioid sarcoma in June 2015 when she was 21-years-old and has since undergone six major operations due to numerous complications.

Her mother, Allison Semikin, 52, put her school teaching job on hold to fly out to Jacksonville in Florida to be with her eldest daughter when she stated proton beam therapy after a second scan revealed the tumour between Miss Semikin’s spine and pelvis.

Mrs Semikin said: “When your child is going through cancer it’s an incredibly lonely experience, so isolating. You get forgotten.

“There were times that I was scared that Beth would die and I found it hard to open up and tell anyone about how I was feeling.

“I’ve had a few panic attacks and got close to the point where I asked for support, but then I felt like I’d got over that hurdle.”

During a routine scan in therapy Mrs Semikin and her daughter found out that the tumour had returned double the size because the initial treatment which removed it by a surgical sucker was incorrect and doctors were not sure they could operate again.

Fortunately, Miss Semikin, her younger brother and parents heard a few days that she would be able to undergo an 11-hour spinal surgery back in the UK before returning to Florida with her mother for more therapy.

Mrs Semikin added: “Beth’s problems definitely haven’t ended now that she’s in remission, recovery has been very difficult.

“Her multiple surgeries and tests have left her with nerve damage and she needs to self-catheterise.

“She also has incontinence, mobility issues and pain every day. Beth hasn’t had an opiate free day since September 2015.”

Throughout the years of diagnosis, operations and treatment the family were supported by the UK’s leading children’s cancer charity, CLIC Sargent working closely with a social worker and also spent time in the charity’s free ‘Home from Home – Paul’s House’.

Ms Semikin said: ““Our CLIC Sargent Social Worker Kate is a hero; she was an absolute life saver.

“She helped us so much with making sure we could access all of the financial support that was available.

“She advised us how to fill out different forms to make sure we had the best chance of getting the support because the benefit system can be so difficult.

“Kate also helped Beth to get a couple of CLIC Sargent grants - Beth had two jobs at university and when she got unwell she had to give them up.

"She found it really hard to lose that independence and not having her own money for basic things.

“CLIC Sargent made this whole experience more bearable and I don’t know what we would’ve done without the support.”

As part of September’s childhood cancer awareness month CLIC released research which revealed that 63 per cent of parents said they experienced depression during their child’s treatment and 37 per cent experiencing panic attacks.

A shocking 84 per cent reported feeling lonely and less than 40 per cent of parents found access to support for managing stress and anxiety during their child’s treatment.

Ms Semikin said: “I’m not the same person that I was before. Your priorities completely change and it’s like you end up with a different mind-set.

“Families definitely need more support and encouragement to talk openly about how they’re feeling.”

Both mother and daughter are now helping CLIC Sargent to raise awareness about the emotional and mental health impact diagnosis and treatment can bring to families.

Kate Lee, chief executive of CLIC Sargent, said: "Parents like Allison have shared painfully honest accounts with us highlighting the hidden costs of cancer – whether it’s the panic they feel every time their child has a high temperature, the emotional strain of staying strong for your family or fearing relapse at any time.

"To be told your child has cancer is devastating news but these findings show just how stark the reality can be for parents. It is vitally important that these families can talk about what they are going through and get the support they need. At CLIC Sargent, we know cancer’s impact stretches far beyond the shock of diagnosis and can last long after treatment finishes, this is why we strive to support the whole family, not just the person with cancer”.