Patient stories

Isobel Raban

Isobel Raban was just 13 yrs old when she was diagnosed with Ewing's Sarcoma, a type of bone cancer, in November 2011. Following a flu-type bug which she couldn't shake off, the teenager then began complaining of severe back pain which suddenly got much worse.

Mum Ruth said; "Isobel had been out horse riding when she complained of pain in her back. We took her back to the doctors where she was referred to Preston Hospital for tests and scans. It happened very quickly."

Five days later, Isobel was transferred to the Royal Manchester Children's Hospital where she began a course of six cycles of chemotherapy followed by surgery on her spine.

Ruth, who works at Lancashire County Council, went on immediate extended leave. Isobel's dad Dominic is self-employed and Ruth said keeping the business going through Isobel's diagnosis and treatment was very hard.

Throughout her treatment, Isobel came to The Christie for appointments with her consultant Dr Ed Smith. The couple, who also have a son Oscar, were then given the news that Isobel's cancer needed a type of treatment called Proton Beam Therapy (PBT) - a cutting edge radiotherapy treatment.

The Raban family, who live in Preston, went to Jacksonville in Florida for around two months from June 2012 to August 2012. Isobel underwent PBT at the University of Florida Proton Therapy Institute.

Ruth continued: "Oscar was 12 at the time and Isobel's 14th birthday was the day after we arrived in America.

"We would drive Isobel to her proton beam therapy appointment every day and then we would try to use the rest of the time as a holiday and do something together as a family.

"Isobel also underwent three cycles of chemotherapy whilst having proton beam therapy at a different hospital called Wolfson Children's Hospital.

"When we found out we were able to travel to America for proton beam therapy we were really pleased. As parents, Dominic and I had obviously done so much research and we knew it would be the most effective treatment for Isobel's cancer.

"That was a real turning point for us in terms of her treatment. We knew we could fight it."

But Ruth admits, going to America as a family for two months brought its own difficulties from a practical point.

"As any parent will admit, you would travel anywhere to get the best treatment for your child," said Ruth. "But there were certainly challenges in travelling to America, such as the practicalities of leaving our house empty for two months and things to consider like who would after the our dog and guinea pigs?

"We had to take Oscar out of school so he missed the last few weeks of his summer term. And Isobel really missed all her friends - but we tried to think about the positives of getting the best treatment for Isobel.

"If we'd been able to have this treatment at home then Oscar would have been able to stay in school and Isobel would have had her birthday at home, so clearly that would have been easier for all of us."

The Raban family paid extra to stay in private, out of town accommodation, but Ruth says that families in similar situations must be able to drive and confidently negotiate the America road system.

Whilst undergoing treatment for cancer, Isobel missed 12 months of school and dropped back a year. She is now busy revising for her GCSE exams.

Ruth added: "She's doing really well now and we're also incredibly proud that the school has made her a prefect for next year too.

"She will still have check-ups at the Children's Hospital but she's just getting back into normal home and school life and enjoying being a teenager - going shopping and being with friends."

Lucy Thomas

Lucy Thomas was just six years old when her family was given the devastating news she had cancer.

Because of the type of cancer she had, Lucy's best option was to have Proton Beam Therapy (PBT), an advanced form of radiotherapy not currently available in the UK.

Lucy, her parents Stuart and Caroline, and her brother Owen, had to travel almost 4.500 miles from Ramsbottom to Oklahoma in the USA for Lucy to have the high-tech treatment that would give her the best possible clinical outcome.

Lucy's cancer story started in 2012 when she had been feeling unwell for several weeks and her parents took her to see their GP several times.

It became clear that Lucy was not getting better from the original diagnosis of a virus and sinusitis and her parents took her to the local A&E department when they saw an unusual growth in her nose.

Lucy was admitted to hospital and diagnosed with a rare type of muscle cancer called rhabdomyosarcoma.

After surgery and chemotherapy, she was referred to The Christie for follow up treatment including radiotherapy.

As part of her treatment, Lucy spent almost 11 weeks in Oklahoma receiving proton beam therapy.

Dad Stuart says: "One of the major benefits of proton beam therapy is that the beam stops when it hits the tumour and causes much less damage to the surrounding healthy tissue."

"Going to the USA was confusing for Lucy. They have a different health system, work in different ways and call things different names which is hard to explain to a poorly six years old. It would have been much easier for Lucy if this treatment had been available in Manchester."

"Owen also missed around eight weeks of school whilst we were out there, so having to go to America for the proton beam therapy really hit us all.

"We kept in regular touch with family and friends back at home, but being away was upsetting for the whole family, and we felt cut off from our extended family and close friends."

Dad Stuart thinks it's important for PBT to be available in the UK, and says: "The main benefit of having proton beam therapy in the UK is that it will be much more accessible. In our case, Lucy's extended family would have been able to help support her though the treatment.

Mum Caroline adds: "It's fantastic to know that proton beam therapy is finally coming to the UK. It will give more children like Lucy the opportunity to have this form of treatment, as not every family is as fortunate as us to be able to move to America for three months."

Lucy's treatment appears to have been successful and although she will always need to have regular check-ups, things are looking good. Now 8 years old, she has taken up piano lessons, enjoys going to Brownies with her friends and has rediscovered a love for swimming that she was not able to pursue because of a suppressed immune system after her treatment.

Lucas Thorpe

Even before his first birthday, four year old Lucas Thorpe from Atherton in Wigan, was diagnosed with cancer.

When Lucas was born, his mum Jodie and dad Dale were over the moon with their little bundle of joy. But when he was just 8 months old they got the news that is every parent's worst nightmare - doctors told them that Lucas had a tumour on his bladder.

Mum, Jodie Rothwell said: "Treating Lucas's bladder area with standard radiation could easily have damaged his developing hip bones resulting in him being in a wheelchair for the rest of his life. He was simply too fragile for this kind of conventional treatment. Proton beam therapy was the only alternative."

Unfortunately, proton beam therapy was only available abroad. This meant splitting the family apart over Christmas as Lucas and his parents travelled to Jacksonville, Florida.

Jodie added: "A long plane journey is the last thing that a desperately sick child with a low immune system needs. Lucas was so ill when we arrived that he was rushed straight into intensive care, where he was diagnosed as suffering from septicaemia, meningitis and pneumonia.

"The septicaemia caused Lucas to lose half of his right foot and the tips of his toes, as well as the tips of his fingers.

"On Christmas Eve, the doctors had to give us the devastating news that Lucas wasn't going to make it, and we requested the priest give him a final blessing. I have never felt so utterly helpless as I did at that moment."

Incredibly, Lucas did make it. After many agonising days of worry and against all the odds he recovered, and was finally able to receive the proton beam therapy he desperately needed.

Jodie said: "We wept with relief when we found out."

Without proton beam therapy, Lucas's story would have ended very differently.

The UK's first high energy proton beam therapy service is due to start treating patients in 2018. The Christie was selected to deliver this specialist treatment, along with University College London Hospitals NHS Foundation Trust.

Lucas' mum Jodie said: "Because the therapy is still in its early stages, Lucas suffered third degree burns on his stomach after the treatment in America. That's why I'm so pleased that proton beam therapy is coming to The Christie and I know that the scientists at The Christie can make it work even better."

Emma Payton

Emma Payton, from Gatley, was just 8 years old when she was diagnosed with Alveolar Rhabdomyosarcoma, a type of soft tissue sarcoma.

Emma's mum, Tracey Payton was devastated when the family were given the news: "It really is the most horrendous thing you could ever hear as a parent, and you would swap places with your child if at all possible," she says.

Soft tissue sarcomas are rare. About 3,300 new cases are diagnosed each year in the UK.

Emma's sarcoma was treated with nine bouts of chemotherapy and she also participated in an extra chemotherapy trial. Following that she had an operation to remove the tumour. Although the tumour was just 3.5cm the operation took nine hours, as it was wrapped around her cheekbone. She then needed radiotherapy treatment.

However, standard radiotherapy treatment was not appropriate for Emma. Her consultant at The Christie, Dr Ed Smith, recommended her as an ideal candidate for Proton Beam Therapy (PBT) because of her age and the location of her tumour.

Tracey said: "I didn't know anything about childhood cancer or radiotherapy but we were told by our consultant that standard radiation treatment would be detrimental to Emma's learning and development because her tumour was in her face. Proton Beam Therapy would reduce the risks to Emma's development, so we had to do it."

The week of Emma's operation was a stressful time, Tracey says: "Emma had her surgery and a round of chemotherapy, after that she was allowed to come home and after just one day at home we flew out to America for her Proton Beam Therapy treatment. She was mortified to have a wheelchair on the plane, her head was swollen from the operation and she had no hair and eyelashes from the chemo. She was so embarrassed."

The whole family made the journey to Oklahoma including Emma's dad Phil, Emma's twin brother Ben, her older sister Holly and her grandmother.

The family had to stay in Oklahoma for eight weeks before Emma had recovered enough from her operation to have the Proton Beam Therapy. She had 23 short bursts of the therapy and had to wear a specially created mask to pin her to the bed while the therapy took place.

On her final day of treatment in Oklahoma, Emma was invited to ring a bell to mark the end of her journey. The family were so moved and inspired by this, they have donated and distributed 56 bells to hospitals across the UK since returning home.

Currently the NHS has to send patients needing Proton Beam Therapy abroad for treatment. But the Government has pledged £250m to build two new proton beam therapy centres in the UK. The Christie has been chosen as one of those sites, the other is University College London Hospitals NHS Foundation Trust.

The Christie Proton Beam Therapy site is due to open in 2018 and will treat up to 750 patients a year at full capacity.

Emma's bell will be housed in the new state-of-the-art Proton Beam Therapy centre at The Christie when it opens.

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