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Sally Roberts: runaway mother will 'allow radiotherapy if son's cancer is back' United Kingdom
Contamination level: Severe illness! Forced to abandon a home.
Author: Agnes Ingvarsdottir Created: 28 Feb 2013 Updated: 28 Feb 2013 Viewed: 8600 time(s)
A mother who ran away with her seven year-old son to prevent him receiving life-saving medical treatment admitted tonight that she would reconsider radiotherapy if his cancer had returned.
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Neon Roberts: mother stands by legal bid to stop son receiving radiotherapy for brain tumo Created: 28 Feb 2013
Neon Roberts: mother stands by legal bid to stop son receiving radiotherapy for brain tumour
Sally Roberts, the mother who tried to prevent her seven-year-old son receiving radiotherapy for a brain tumour, has claimed her son's health is more at risk now that he is receiving treatment.
A High Court judge ruled late last year that Sally Roberts' son Neon should undergo radiotherapy for the cancerous tumour against her wishes.
Although the youngster has a survival rate of up to 82 per cent now, Ms Roberts, 37, said she was upset by the decision to press ahead with the treatment.
Speaking on the London radio station LBC, Mrs Roberts said: "Neon is doing as I anticipated. He is suffering from side-effects that I so feared.
"He is already suffering from chronic fatigue, constipation, nausea, loss of appetite and, consequently, weight loss, hair loss, reduction in saliva, damage to the salivary glands and poor short-term memory.
"The doctors are not really saying much to me - not nearly enough.
"I constantly ask them about the side- effects and that is what I am most unhappy about."
Asked for her view on the legal battle, she told BBC Radio 5 Live's Victoria Derbyshire: ''I stand by that. I'm upset that they moved forward in the way they have.
''I'm having to face the side-effects from the radiation and the chemotherapy, which is devastating.''
Ms Roberts, a New Zealander living in Brighton, East Sussex, said ''weak and fragile'' Neon had lost his hair and suffered weight loss, poor short-term memory and poor co-ordination.
But, despite the side-effects, Ms Roberts said she has been told the success rate from having the treatment has been put at between 67 per cent and 82 per cent.
She said: ''I have never doubted that he was not going to be alive at the end of this, with or without treatment.
''I just felt that he would be much better off without the treatment and providing the body with what it needs to heal, not bombarding it with radiation, which is what we are taught to avoid.
''I don't understand why we are using it in hospitals. I find it barbaric and plain torture. Needlessly, children are suffering.''
She added that the course of treatment was ''unnecessary'' and went on: ''They just come in with their conventional cure and it's worse than the condition itself.''
Ms Roberts made headlines when she disappeared with Neon but both were found safe and well after a judge ordered a search. She later apologised for vanishing and said that she had panicked.
Ms Roberts told the show: ''Why did I take him away? Because I was being panicked into making a decision without being informed and I needed to gather more information.
''I asked them where they were getting their statistics from and they could only provide me with a study from the 1940s.''
In December, a High Court judge ruled that Neon could receive radiotherapy for the tumour, against the wishes of Ms Roberts whose judgment, he said, ''had gone awry''.
Mr Justice Bodey dismissed Ms Roberts' attempt to prevent her son having radiotherapy treatment, and expressed concern over her decision-making regarding his welfare.
Ms Roberts, who had earlier failed in a similar legal bid to prevent surgeons performing a follow-up operation on Neon, feared that radiotherapy would cause long-term harm.
Mr Justice Bodey, who had been told by doctors that Neon could die within months without radiotherapy treatment, said he sympathised with the ''nightmare'' confronting Ms Roberts.
But he said he was worried that she had not grasped the seriousness of Neon's situation, and that the operation she opposed was life-saving.
The judge ruled that radiotherapy sessions could start and that Neon should live with his father Ben - who is separated from Ms Roberts - for the duration of his treatment.
And during the hearing in the Family Division of the High Court in London, he said that, in future, doctors would need only Mr Roberts' consent when making decisions about Neon's cancer treatment.
He said it was important that doctors were not hampered by a ''stalemate'' if parents took differing views.
Ms Roberts said her focus now was to try to offer as many natural therapies as possible to ''eradicate side-effects of radiation'' from Neon.
Professor Richard Grundy, a professor of paediatric neuro-oncology, told the show: ''I think we all accept that we are using treatments that are fighting fire with fire but we do so with reasonable success.''
He added: ''We all accept that we are still using treatments that have significant side-effects but the notion that we are not doing anything to understand that is untrue.''
http://www.telegraph.co.uk/news/9894937/Neon-Roberts-mother-stands-by-legal-bid-to-stop-son-receiving-radiotherapy-for-brain-tumour.html
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I WILL agree to radiotherapy if my son has cancer, Created: 28 Feb 2013
I WILL agree to radiotherapy if my son has cancer, says mum who ran away to stop him receiving the life-saving treatment
The mother who went on the run with her son to prevent him being given radiotherapy has dramatically relented – saying last night that she would allow doctors to perform the potentially life-saving treatment if his cancer had returned.
Sally Roberts, 37, sparked a nationwide hunt when she disappeared last week with her seven-year-old son Neon, who is recovering from the removal of a large brain tumour in October.
She claimed she had been told by a doctor that medics would have to ‘fry his [Neon’s] brains’ with radiotherapy to make sure his cancer would not recur.
The mother of two has since been fighting a high-profile legal battle with doctors to try to stop them giving Neon the treatment.
But after an MRI scan on Friday showed what appeared to be a one centimetre mass on her child’s brain, Mrs Roberts declared that she would support radiotherapy if it turned out to be cancer.
The mass showed up on the scan in the cavity where Neon’s medulloblastoma tumour was removed during a nine-hour operation on October 25.
Mrs Roberts remains convinced further tests will show that whatever has shown up on the scan is not cancerous.
If, however, the tumour has returned, she says she feels ‘completely’ differently about what course of treatment to pursue and would support doctors using radiotherapy.
‘I have to, don’t I?’ she added. ‘My hands are up.’
Fearing radiotherapy would cause devastating side-effects, such as infertility and lower IQ, Mrs Roberts had wished to be allowed to defy doctors’ orders and pursue alternative treatments. But a High Court judgment on whether she could prevent her son having radiotherapy was dramatically adjourned on Saturday following the medical ‘developments’.
‘The doctor rang and said they saw something in the scan,’ Mrs Roberts said.
‘He [the doctor] called again and I spoke to him. “Something is showing up”, they said. But they were very vague.
‘They said, “We can see something and we need to do another scan on Monday to determine what it is”. He was very hopeful everything is still going to be OK.’
Neon is due in hospital this morning to have another MRI scan and a lumbar puncture to test his spinal fluid.
Should the cancer have returned, he is likely to have to have another operation before undergoing radiotherapy and chemotherapy.
Even if the new scan is clear, the High Court could rule that radiotherapy must go ahead when the case concludes on December 18 following updated medical reports.
The court has previously heard from doctors that if Neon does not receive radiotherapy, ‘the alternative is death’.
A High Court judge last week made the extraordinary decision to name Neon in an attempt to find him after his father, Ben Roberts, became concerned that he had not heard from his former wife in four days.

He said he feared she had run off with Neon so she could prevent him having treatment.
Mrs Roberts, who is originally from New Zealand, was found with her son at 1.30am on Thursday in East Grinstead, West Sussex, where he had been undergoing treatment in an oxygen chamber after they fled from Devon last Sunday.

When he was taken from her, he asked: ‘Am I ever going to see you again, Mummy?’ He was then put in foster care before being returned to his father.
Mrs Roberts – who is an advocate of natural medicines and feeds her children a strict diet of organic foods and juices – insisted to the court that she was ‘not a bonkers mother’ and simply wanted what was best for Neon.
Mr Roberts, who wants his son to be treated conventionally, is looking after Neon and his twin sister, Elektra, while his former wife fights her case in the courts.
Mrs Roberts is now looking into the possibility of her son being treated using an ‘integrated approach’.
Should he require radiotherapy and chemotherapy, she wants him to be given mineral and vitamin supplements intravenously at the same time.

She also wants him to be able to continue with oxygen therapy.
Mrs Roberts’s reluctance to allow her son to be treated with radiotherapy has caused delays, meaning it is very close to the 49-day deadline when the treatment must begin or a patient’s chance of survival is significantly reduced.
After finding out about the recent scan results, other members of Neon’s family spoke out about the need for urgent radiotherapy.
His paternal grandfather, Christian Roberts, a wealthy hotelier in Barbados, said: ‘I support my son.
‘I want Neon to have whatever treatment is going to make him better.’

And here is the Untimate UN-Ananswered question: Why Are There So Many Small Children Suffering And Dying From Cancer?
http://www.dailymail.co.uk/home/search.html?sel=site&searchPhrase=mother+of+cancer+boy

http://www.dailymail.co.uk/news/article-2243542/Neon-Luca-Roberts-taken-foster-care-mother-tried-stop-life-saving-cancer-treatment.html
By Paul Bentley and Rosie Taylor
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I'm not a bonkers mother': Created: 28 Feb 2013
Runaway mother tells judge she was only looking after cancer sufferer son's best interests when she prevented him having treatment
· Mother Sally Roberts says she ran away with son Neon as she fears radiotherapy will permanently affect his IQ and damage his growth
· She has been giving her seriously ill son natural medicine
· Doctors disagree with her decision and have started legal proceedings
· Mrs Roberts, 37, said she was not a 'bonkers mother' and that she 'only wanted the best for her son'
· Neon was temporarily placed into foster care then given to his father
A 37-year-old who took her critically ill seven-year-old son into hiding today denied she was a 'bonkers mother' and said she 'only wanted the best for her son'.
Sally Roberts ran away with her son Neon from Devon to Sussex because she thought cancer treatment would 'fry his brain', she told the High Court in London.
She believes Neon is 'not a sick boy' and should only be given 'natural remedies' while he recovers from surgery on a brain tumour, because radiotherapy could 'damage his growth'.
Her lawyer today asked the judge for sympathy, insisting that Mrs Roberts's position was 'principled, reasonable and in the best interests of Neon [her son]'.
But doctors said it is 'clearly' in Neon's best interests to have radiotherapy and chemotherapy and today argued that 'the alternative is death'.
Mrs Roberts said, 'I very much apologise', as she gave evidence on the first day of the hearing to decide what treatment Neon should have.
She told the judge that whatever decision the court made, 'I would still like every day to be part of my son's life. I feel I must be part of his care . It is very important for me and my son. We are very close.'
She fled the house in Devon where she and Neon were staying on Monday and took him to Sussex to stop him having the life-saving radiotherapy.
Fearing for Neon's survival, a judge ordered a nationwide search and allowed the boy's identity to be released to the media to help track him down.
The schoolboy is currently staying with his father, Ben, while his mother argues over his treatment in court.
A lawyer representing health authorities treating Neon told the court the 'alternative is death'.
Mr Justice Bodey said Neon's illness was the 'stuff of every parent's nightmare' and added that he would have to balance what treatment would achieve against the 'downsides'.
But doctors told that court that without it, the boy's medulloblastoma tumour may recur and he will die.

Mrs Roberts said her big fear was Neon being left with a lowered IQ after the treatment.
'I want him to have the best quality of life and I fear that radiotherapy could damage and greatly affect his future,' she told the judge.
'He has an incredible sense of humour. He is a great artist.
'He has been made out that he is sick and this is not true. He is very well. He is running around. He is not a sick boy.
'I feel that, if you go ahead with the radiotherapy, we are depriving him of his talents.
'He is thriving . He has done so well since being in hospital.'
A High Court appeal helped locate the pair in East Grinstead, West Sussex.
'I was forced into that situation,' Mrs Roberts told the court. 'That was the very worst thing I could possibly have done.
'I was given no choice. I thought if I brought him to the hospital they would not let me take him home and proceed with the treatment.'
Robin Tolson QC today told Mr Justice Bodey he hoped for 'much sympathy' for Mrs Roberts' position, and pointed to evidence of risks of significantly lowered IQs in those who undergo radiotherapy and chemotherapy, as opposed to chemo alone.
'Such a significant loss of intellectual functioning is a real impairment to quality of life, particularly in the world Neon is likely to inhabit as an adult,' he said in court documents.
But NHS barrister Eleanor Grey QC argued that radiotherapy has been the norm for medulloblastoma patients since the 1950s and before that 'all patients died'.
'Alternatives such as omitting radiotherapy and using chemotherapy only are associated with significantly poorer survival rates,' she told the court in written arguments.

'If a balancing exercise assessing the proposed treatment is conducted, on the positive side of the scales is the fact that prompt treatment, involving radiotherapy and chemotherapy, leads to a high chance of recovery.
'Since with no additional therapy medullablastoma will recur, the alternative is death.'
Mrs Roberts claimed last night in court that a doctor told her radiotherapy would ‘fry his brains’.
High Court judge Mrs Justice Hogg made the extremely rare ruling that Neon could be named in an attempt to find him after his father Mr Roberts, 34, became concerned at having not heard from his wife and son in four days.
Police and social workers took Neon from his mother shortly after 1.30am yesterday in East Grinstead.
He was temporarily placed into foster care and then given to his father, who is separated from Neon’s mother and lives in London.
But Mrs Roberts said she was out of contact because she was in Sussex taking Neon for treatment in an oxygen chamber and does not carry a mobile phone in case it affects his health.
Neon’s brain tumour was reportedly removed in full during surgery on October 25 – immediately after he was diagnosed with the aggressive medulloblastoma form of cancer.
Doctors then wanted to carry out the standard procedure of treating him with radiation to remove any further cancer cells and reduce the chances of the disease recurring.
However, Mrs Roberts, from Brighton, East Sussex, claims that when a doctor, he referred to the procedure as ‘frying his brains’.
‘I lost all confidence in him,’ she said. ‘It was frightening and very unprofessional. I thought, they have got the whole tumour out so why are they frying his brain?
‘I fear they are going to fry my son’s brain when there are other ways we could proceed. I feel it is very unnecessary and I’m sure any mother who had researched like I have would feel the same.
‘This is my only son. He’s my world. I need to be able to tell him I did everything I could for him.’

Mrs Roberts, who is originally from New Zealand, added that she fears radiotherapy will permanently damage Neon's growth and future fertility. She wants to see if the tumour returns before resorting to radiation.
She said: ‘If I truly believed he had cancer now in his body I would agree to go ahead. But they are going after one cell that might be there. I am convinced it is not there because of the scans and because his spinal fluid is clear.
‘I don’t want to fry his brain and have his quality of life ruined just on the off chance there is a floating cell that is going to multiply.
‘All I’m doing is protecting my child. I’m doing what any mother would do.’
Neon has undergone a range of alternative therapies since his operation, including hours in an oxygen tank.
Mrs Roberts will not allow mobile phones near Neon in case they damage his health, feeding him a diet of organic foods and juices.
She is well-known in music circles and has performed as DJ Sally at venues ranging from Glastonbury Festival to Boujis Nightclub in London.
Her parents, Don and Lilian Leese, who live in North Tawton, Devon, said they support their daughter’s decision.

Mrs Leese, 72, added: ‘Sally is the most caring, wonderful mother. She is totally dedicated to her children. Everything she is doing is what she believes is in Neon’s best interests.
‘She wants to work with [the doctors] but the medical profession want to do it all their way. One of the doctors scared the living daylights out of her, referring to it as “frying his brains”.
'That is something you don’t say to a mother whose child has just been diagnosed with a brain tumour.’
Mr Roberts, an IT consultant from Knightsbridge, west London, and the son of British actor Christian Roberts, described his estranged wife as a ‘concerned mother’, but added: ‘I want to make sure [Neon] has everything available to him. I understand there are lots of things that can be done to minimise the effects of radiotherapy.’
The hearing continues and the judge is expected to give his ruling tomorrow.
By Paul Bentley, Ryan Kisiel and Emine Sinmaz
http://www.dailymail.co.uk/news/article-2244602/Sally-Roberts-Runaway-mothers-lawyer-pleads-judge-sympathy-fled-son-Neon-7-fearing-cancer-treatment-fry-brain.html
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'I had no choice': Created: 28 Feb 2013
Mother who ran away with her seven-year-old son to stop him having cancer treatment tells her story on Daybreak
· Sally Roberts, 37, who lives in Devon, disappeared with Neon to stop him having radiotherapy for cancer
· Believes there are other options to explore and is concerned about long-term effects of treatment

A woman who ran away with her seven-year-old son to stop him having cancer treatment said she had 'no choice' because she felt she was on a 'conveyor belt'.
Sally Roberts, 37, who is from New Zealand but lives in Devon, disappeared with Neon after a dispute with her estranged husband Ben over the boy's condition and treatment, despite doctors saying their son could die within months without radiotherapy.
Today Ms Roberts told ITV's Daybreak that she does not necessarily want him treated in an 'alternative way' but wanted options other than radiotherapy explored amid her fears of its potentially damaging affect on Neon.
She agreed that going on the run with her son was an 'act of desperation'. She said: 'I was on a conveyor belt and I had no choice. They said treatment must start.
'I thought if I was going to take him to the hospital they would never let us go home.'
New Zealander Ms Roberts, who was living in Tiverton, Devon, hit the headlines last week when she disappeared with Neon.
Both she and her son were found safe after a judge ordered a search. Ms Roberts, who now lives in Brighton, East Sussex, later apologised for vanishing and said that she had panicked.
She told Daybreak that she was not adamantly opposed to giving her son radiotherapy treatment. She said: 'I have been asking the whole time, ‘Please show me evidence that he does need this treatment'.
'The only thing they can come up with is a study from the 1940s. It's just radiotherapy, this is how we do it, chemotherapy - they haven't been exploring other options.'
Ms Roberts said she had been contacted by medical professionals supporting her belief that there are other options to treat her son. Speaking about why she was so against her son receiving radiotherapy, she said: 'Because it damages your DNA.
'I feel we can still save his life. I'm incredibly confident. That's exactly why I don't just want to race into radiotherapy.'
She said her son has no idea about the furore surrounding his treatment, saying he just does not want to go back to hospital.
Neon's father, who lives in London and is separated from Ms Roberts, was 'open' to her approach to dealing with his condition, she added.
She said: 'The whole time he has been saying that if you can come up with other medics and doctors who are backing you and agreeing, then of course. He just wants the best for Neon.'
Asked how she would feel if by denying him treatment, Neon died, Ms Roberts said: 'How do I live with myself if I allow him to have radiotherapy and I have to then watch him suffer the consequences of that treatment?'
She went on: 'I feel that with the integrated approach, he's going to be alive anyway otherwise I would absolutely go for treatment. But I do feel we need to explore other options because it's really evil, this protocol that the doctors are following.'
By Martha De Lacey
http://www.dailymail.co.uk/femail/article-2246877/Sally-Roberts--disappeared-Neon-prevent-having-radiotherapy--talks-ITV-Daybreak.html
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'My little boy's cancer has come back' Created: 28 Feb 2013
'My little boy's cancer has come back' reveals runaway mum but says she is '50/50 still' on whether she will agree to him having radiotherapy
The mother who went on the run to prevent her son being given radiotherapy revealed last night the heartbreaking news that his tumour has regrown.
But while Sally Roberts, 37, had said she would relent and allow seven-year-old Neon to have the treatment if the cancer returned, yesterday she said she was ‘50/50 still’.
‘It’s all up in the air,’ she said. ‘I don’t want my boy to have radiotherapy because of the side effects. I still think Neon does not need it.
‘I will continue to do research. If I can find any doctor who says he does not need it I will continue to fight.’
Mrs Roberts, 37, sparked a nationwide hunt ten days ago when she went on the run with Neon, who had an operation to remove a large brain tumour in October.
The mother of two disappeared after a doctor told her radiotherapy was needed to ‘fry his brain’ to make sure the cancer did not return.
Authorities tracked them down last Thursday. Neon is now being looked after by his father, Mrs Roberts’s estranged husband, Ben.
Mrs Roberts has since been fighting a high-profile legal battle with two hospitals to stop them giving Neon the treatment, arguing that he should be healed with alternative therapies instead. Mr Roberts believes he should have conventional treatment.
Yesterday, doctors told Neon’s parents that cancer had returned to the area where the previous medulloblastoma tumour was removed during a nine-hour operation on October 25.
A one centimetre mass was spotted after an MRI scan on Friday, and while Mrs Roberts was hopeful this would turn out to be harmless, further tests performed on Monday afternoon confirmed the worst.
It is now 48 days since Neon’s first operation, just one day from the 49-day deadline when radiotherapy must begin or a patient’s chance of survival is significantly reduced.
The little boy now needs further surgery to remove the regrowth and courses of chemotherapy and radiotherapy – although Mrs Roberts is seeking second opinions on the scans before consenting.
She and Mr Roberts were called to an urgent 45-minute meeting with a neurosurgeon yesterday.

Afterwards, Mrs Roberts told the Daily Mail: ‘It is dreadful, it is really awful. It does seem to be a one centimetre regrowth and they want to do more surgery.
‘But the doctors are saying it is not too bad. It is in the big cavity where the last tumour was so it could be a lot worse. Everyone is very positive about it.’
Mrs Roberts fears that radiotherapy will cause devastating side effects, such as infertility and reduced IQ. But while she had previously said she would allow doctors to perform radiotherapy if the cancer returned, she now says she will seek further medical opinions.
She added that she particularly wanted to continue the legal battle for other mothers in her position, who she believes should have the right to stop their children being given possibly unnecessary radiotherapy if their cancers have been removed in full by surgery.
A High Court judgment on whether Mrs Roberts could prevent her son having radiotherapy was adjourned on Saturday.
It will make its ruling next Tuesday, following updated medical reports.
By Paul Bentley
http://www.dailymail.co.uk/news/article-2246704/Sally-Roberts-My-little-boys-cancer-come-reveals-runaway-mum.html
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Neon is now in foster care and his welfare will be considered in the High Court tomorrow Created: 28 Feb 2013
· Sally Roberts, 37, and Neon Luca Roberts were last seen on Sunday
· Neon is now in foster care and his welfare will be considered in the High Court tomorrow
· Judge revealed the boy's identity after becoming concerned about his health
· Without the post-brain surgery treatment, Neon's chances of survival would have been significantly reduced
· He is currently at the centre of a court battle between his parents over whether he should have radiotherapy for the tumour

The missing seven-year-old whose mother ran away with him to stop him having cancer treatment has been temporarily put in foster care.
Neon Roberts, who disappeared from Tiverton in Devon on Monday, is now being given emergency treatment, after a frantic nationwide search for him was mounted over the past four days.
His mother Sally, 37, had taken her son to Sussex, more than 160 miles away, because she only wanted him to be given ‘natural remedies’ as he recovers from surgery on a brain tumour.
A judge yesterday revealed Neon's identity following concerns that he might not survive if he was not given treatment immediately.

A statement released by Devon and Cornwall Police at 2.30am said: 'Following extensive Press coverage on 5th and 6th December 2012, the high risk missing person, seven-year-old Neon Roberts, has been located by police officers in Sussex.
'He is currently in foster care and Neon’s welfare will be considered in the High Court tomorrow.
'Devon and Cornwall Police would like to thank the public, the media and police colleagues in Sussex for their assistance in securing Neon’s safe recovery.'
The ‘very sick’ boy’s doctors had said his chances of surviving would be ‘dramatically reduced’ if he did not begin radiotherapy soon, and his father was desperate to make sure his son had ‘everything available’ to help him fight the disease.

Mrs Roberts and her estranged husband Ben, Neon’s father, are currently at the centre of a court battle over the boy’s treatment for his brain cancer.
In an extremely rare move, a judge sitting at the High Court yesterday ruling that reporting restrictions on the case should be relaxed so that Neon could be identified, to improve the chances of finding him.
The judge said she was ‘deeply concerned’ about the child’s welfare.
Mrs Roberts, originally from New Zealand and a keen believer in homeopathic medicine, had been staying in the West Country with family after Neon underwent brain surgery there.
Mr Roberts, 34, raised the alarm this week after not hearing from his son since the weekend.
Lawyers for the NHS and Devon County Council, who are tasked with looking after the boy’s interests, yesterday agreed his disappearance should be made public and went to the High Court to lift reporting restrictions.
Mr Roberts, an IT consultant from Knightsbridge, west London, said outside court that his wife was opposed to the radiation treatment, fearing that it might damage their son’s ‘intelligence, growth and hormones’.

He said: ‘She wants to do everything she can and rely on natural remedies and things that are not too invasive, rather than radiotherapy and chemotherapy.
‘She is worried about the damage that can be done. She wants him to be able to live a normal life.
‘Personally, I want everything for him. I want to make sure he has everything available to him. I understand there are lots of things that can be done to minimise the after effects of radiotherapy, with various other pre- and post-treatments.
‘All the evidence I have been presented with has told me he needs to have that therapy, but I am also aware there are side effects. It concerns me as well.’
Making the ruling, Mrs Justice Hogg said: ‘I have made an order permitting the identification of the child, Neon Luca Roberts, who is aged seven. It’s thought that he is need of urgent life-saving hospital treatment.
‘He suffers from a brain tumour and has recently had surgery and the doctors responsible for his treatment believe he urgently needs radiotherapy.
‘His mother, Mrs Sally Roberts, who is also known as Sally Lees, is opposed to the treatment and has disappeared with Neon. She was last seen in Devon on Sunday.
‘Her family have had no contact with her for several days and are very concerned for her and Neon.
‘The doctors say that, unless treatment is started next week, the prospects of Neon surviving are dramatically reduced. I have asked for the assistance of the public in looking for this very sick little boy.
‘I have also made urgent arrangements for a hearing to consider the case and future treatment on Friday of this week by a judge of the Family Division of the High Court.
‘I hope very much that Mrs Roberts will make contact with her solicitors and the court as soon as possible.
‘As I say, there is an urgent hearing fixed for Friday this week, where she will be able to put her case before any decision about treatment is given.
‘I can only urge her to come forward. I am deeply concerned for the welfare and wellbeing of this little boy.’
The NHS and local authorities have the right to take legal action when parents are opposed to treatment that doctors deem necessary to save their child’s life. To protect the child’s privacy, the identities of the families involved in such cases are rarely revealed.
Mrs Roberts is well-known in music circles, and has performed as DJ Sally at events and venues ranging from Glastonbury Festival to Boujis Nightclub in London.
THE RISKS OF RADIOTHERAPY TREATMENT
Permanent side effects from radiotherapy are more common in children, as their nervous systems are still developing and more likely to be harmed by radiation.
Physical problems following treatment for a brain tumour may include limb weakness, poor balance and uncontrollable shaking.
According to a National Cancer Institute survey, a quarter of children have fits or blackouts after the type of radiotherapy that Neon would undergo, and a third have headaches or migraines.
A small number will also be left with hearing difficulties, while some may lose their sight.
There is also a risk of mental side effects. Some children may have difficulties with learning and problem solving, and suffer from poor short-term memory.
Others may find that their brain tumour symptoms even get worse after beginning radiotherapy treatment. This is because it causes a temporary swelling in the area that is being treated, which can lead to headaches, nausea and fits.
In the short-term, the treatment can also cause tiredness and hair loss on the area of the head being treated.
Delayed side effects, which might not appear for some months, include a loss of appetite, a lack of energy and worsening of old symptoms. This is because the radiation kills tumour cells but also damages some healthy cells, according to Cancer Research UK.
Some patients may not experience adverse effects until years after their treatment. These problems, which can be permanent, include difficulty thinking clearly, poor memory, confusion and personality changes.
'My little boy's cancer has come back' reveals runaway mum but says she is '50/50 still' on whether she will agree to him having radiotherapy
By Paul Bentley
PUBLISHED: 00:37, 12 December 2012 | UPDATED: 10:42, 12 December 2012
The mother who went on the run to prevent her son being given radiotherapy revealed last night the heartbreaking news that his tumour has regrown.
But while Sally Roberts, 37, had said she would relent and allow seven-year-old Neon to have the treatment if the cancer returned, yesterday she said she was ‘50/50 still’.
‘It’s all up in the air,’ she said. ‘I don’t want my boy to have radiotherapy because of the side effects. I still think Neon does not need it.
‘I will continue to do research. If I can find any doctor who says he does not need it I will continue to fight.’
Mrs Roberts, 37, sparked a nationwide hunt ten days ago when she went on the run with Neon, who had an operation to remove a large brain tumour in October.
The mother of two disappeared after a doctor told her radiotherapy was needed to ‘fry his brain’ to make sure the cancer did not return.
Authorities tracked them down last Thursday. Neon is now being looked after by his father, Mrs Roberts’s estranged husband, Ben.
Mrs Roberts has since been fighting a high-profile legal battle with two hospitals to stop them giving Neon the treatment, arguing that he should be healed with alternative therapies instead. Mr Roberts believes he should have conventional treatment.
Yesterday, doctors told Neon’s parents that cancer had returned to the area where the previous medulloblastoma tumour was removed during a nine-hour operation on October 25.
A one centimetre mass was spotted after an MRI scan on Friday, and while Mrs Roberts was hopeful this would turn out to be harmless, further tests performed on Monday afternoon confirmed the worst.
It is now 48 days since Neon’s first operation, just one day from the 49-day deadline when radiotherapy must begin or a patient’s chance of survival is significantly reduced.
The little boy now needs further surgery to remove the regrowth and courses of chemotherapy and radiotherapy – although Mrs Roberts is seeking second opinions on the scans before consenting.
She and Mr Roberts were called to an urgent 45-minute meeting with a neurosurgeon yesterday.

Afterwards, Mrs Roberts told the Daily Mail: ‘It is dreadful, it is really awful. It does seem to be a one centimetre regrowth and they want to do more surgery.
‘But the doctors are saying it is not too bad. It is in the big cavity where the last tumour was so it could be a lot worse. Everyone is very positive about it.’
Mrs Roberts fears that radiotherapy will cause devastating side effects, such as infertility and reduced IQ. But while she had previously said she would allow doctors to perform radiotherapy if the cancer returned, she now says she will seek further medical opinions.
She added that she particularly wanted to continue the legal battle for other mothers in her position, who she believes should have the right to stop their children being given possibly unnecessary radiotherapy if their cancers have been removed in full by surgery.
A High Court judgment on whether Mrs Roberts could prevent her son having radiotherapy was adjourned on Saturday.
It will make its ruling next Tuesday, following updated medical reports.
http://www.dailymail.co.uk/news/article-2243542/Neon-Luca-Roberts-taken-foster-care-mother-tried-stop-life-saving-cancer-treatment.html
By Ryan Kisiel and Emine Sinmaz
http://www.dailymail.co.uk/news/article-2246704/Sally-Roberts-My-little-boys-cancer-come-reveals-runaway-mum.html
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Am I ever going to see you again Mummy? Created: 28 Feb 2013
What Neon, 7, cried as he was snatched by social workers from mother who took him on the run to block life-saving cancer treatment
· Sally Roberts went on the run with her son Neon to prevent him being given radiotherapy treatment following the removal of a brain tumour
· Mrs Roberts appeared in the High Court yesterday and put forward her position and the hearing was adjourned

Sally Roberts woke up this morning, still in limbo, awaiting a judge’s decision about her son’s cancer treatment. She spent all of yesterday at the High Court in London, where she put forward her position with passion and conviction. The hearing was adjourned again today.
It was a long and difficult day, but Mrs Roberts’s problems were put aside afterwards — albeit fleetingly — when she was reunited with seven-year-old Neon.
Last Sunday, Mrs Roberts went on the run with her son to prevent him being given radiotherapy treatment following the removal of a brain tumour.
It is not clear precisely when the police became aware that Mrs Roberts and Neon were at an address in East Grinstead, West Sussex.
What is known is that they chose to mount their ‘rescue’ operation at 2am while they were fast asleep.
They banged on Mrs Roberts’s bedroom door and insisted they get dressed and leave. Then, though clearly not in any physical distress, Neon was taken immediately to hospital and examined.
After those checks, he was forcibly removed from his mother and sent away with two social workers he’d never met.
Was such upheaval really conducive to ensuring the welfare of a sick child?
Yesterday’s High Court hearing — the first time Mrs Roberts had been seen in public since fleeing her home with Neon — was the culmination of a week of extraordinary drama for mother and son.
She listened intently as a barrister giving a submission on behalf of the NHS told the courtroom that if Neon did not have radiotherapy, ‘the alternative is death’.
She told Mr Justice Bodey she was sorry for going into hiding and said she was not a ‘bonkers mother’. ‘I very much apologise,’ she told the court. ‘I want only the best for my son.’ When the story broke on Thursday, the circumstances seemed clear enough.
Here was a well-meaning, but misguided mother who was putting her sick child’s life at risk because of her belief in the powers of ‘alternative’ therapies and her distrust of conventional medicine. The urgent intervention of medical professionals and the authorities seemed essential to save the boy’s life.
Mrs Roberts became the target of almost universal criticism. What kind of mother, after all, would deny her child treatment that doctors insisted was so vital?
Today, in her first interview, Mrs Roberts tells her full story for the first time — and a rather more complex picture emerges.
She insists, first and foremost, she is not implacably opposed to radiotherapy, but simply seeking opinions from other experts in order to spare Neon an aggressive treatment with serious side-effects, if it can be avoided.
She points out that surgery to remove the brain tumour was successful and that a subsequent scan has shown him to be cancer-free. She would like her son to be ‘monitored’ and if there are indications that the cancer has returned, to proceed with radiotherapy.
And she says she would be open to him having chemotherapy, which has fewer long-term side-effects.
Mainstream medical opinion is unequivocal that Neon has two options: radiotherapy or death. And that he needs radiotherapy now.
But whatever the rights and wrongs of this medical argument — and, of course, it would be foolish to disregard the opinion of eminent oncologists — anyone reading this mother’s story will find it hard not to feel some sympathy for her fears.
I met Mrs Roberts yesterday morning as she was preparing to go to the High Court to argue her case. She was obviously in a state of high nervousness, but there was also a hint of steel about her.
She was highly articulate in arguing her case and not at all ‘flaky’ or ‘New Age’, which may have been the perception of some after the story broke this week.
Mrs Roberts, a music producer and DJ, was born and raised in New Zealand, and came to live in Britain in 1999 to study sound engineering. Her mother is English and she and her father also live in this country.
She met Ben Roberts, an IT consultant, in 2000 (but didn’t marry until 2009) and the couple settled in Devon. Their twins, Neon and Elektra, were born in 2005.
‘Everything was fine, though I did have pre-eclampsia in the late stages of pregnancy,’ says Mrs Roberts.
‘The children have been healthy, though Neon had to have an appendectomy when he was two-and-a-half.’

Eighteen months ago, the couple separated ‘amicably’ and Ben moved to London, while Mrs Roberts stayed in Devon.
‘Ben and I are great friends and he sees the children whenever he wants to,’ she says.
Every parent’s worst nightmare began for the pair last August, when Neon started suffering from severe headaches. Sally also noticed that his neck was swollen.
After going back and forth to the doctor, they finally got a hospital appointment on October 23.
The following day, Neon was given an MRI brain scan and at 4pm Mrs Roberts and her mother, Lilian, were given the news they dreaded. Neon had a medulloblastoma, an aggressive, malignant brain tumour in his cerebellum, above the neck.
Your whole world collapses in front of you,’ says Mrs Roberts. ‘I think I said: “I can’t cope.” I nearly crumbled on to the floor. But you have to cope.’

With no time to be lost, the very next day Neon was taken to the operating theatre, where he spent nine hours in surgery. His mother attempts to describe what those nine hours were like, but breaks down in tears before she can complete the story.
‘It was horrific,’ she says. ‘The emotion, the fear, it’s totally overwhelming. Words can’t explain it.’
Thankfully, the operation was a success and doctors managed to remove the entire tumour.
‘It was the best we could have hoped for,’ she says. ‘But we didn’t know for sure until another scan three weeks later that none of the tumour had been left behind. We were incredibly anxious.
‘Neon was so poorly. He was struggling to get his words out and to move about. I spent the next three weeks with him in hospital, and Ben was there, too.
‘The amazing thing was how well Neon recovered. When he left hospital he was almost back to normal.
‘The way it’s been presented, you would think Neon is desperately sick. But he is running around, really bouncy, it’s incredible.’
A few days after Neon was discharged, Mrs Roberts met a consultant at the hospital to discuss the next stage of his care. This was to be a turning point.
‘We were talking about lots of things to do with Neon’s treatment. The doctor said he would need radiotherapy across all his brain.
‘When I questioned why they couldn’t target only the area where the tumour was, he replied: “You have to fry the whole brain.”
‘He immediately said: “Oh, I shouldn’t have put it like that.” But I was horrified.’
The prospect of radiotherapy would be horrifying for any parent. Among the numerous side-effects are limb weakness, poor balance and uncontrollable shaking.
Mrs Roberts began frantically researching options for treatment and says she discovered that not all hospitals automatically give follow-up radiotherapy to patients who have had brain tumours removed.
‘Giving radiation therapy is the standard protocol following the removal of a brain tumour,’ says Mrs Roberts.
‘But the scan had shown Neon to be cancer-free and his cerebral spinal fluid was clear, which was another strong indicator that the cancer was gone.
‘I felt we should consider the options before we ploughed ahead with radiotherapy.
‘I didn’t feel Neon was being treated as an individual, but that the medical advice I was getting was based on a blanket policy.
‘I wanted to monitor Neon, and if there was any sign that the cancer had come back then, of course, there would be no option but to go ahead with the radiotherapy.’
Over the next two weeks, Mrs Roberts and her son’s doctors argued over his treatment. The boy’s father was sympathetic to her concerns, but on balance felt that radiotherapy was the best way to proceed.
By last week, Mrs Roberts was in a state of near panic and could not bring herself to take Neon to two scheduled hospital appointments.
In response, two NHS trusts sought an emergency order last Saturday to compel Mrs Roberts to allow Neon to undergo treatment.
Already stressed and fearful, the High Court action planted another terrifying thought in Mrs Roberts’ mind — that the authorities were going to try to take Neon away from her.
‘They wanted to take him away so they could give him the radiotherapy. I was convinced the police were going to knock on my door looking for Neon and I wasn’t going to let that happen,’ she says.
On Sunday night, Mrs Roberts packed a small bag and she and Neon left home. While he has been recovering from his treatment, Elektra has been staying with her father in London.
Mrs Roberts drove to the house of a friend in East Grinstead, who runs a centre offering a form of oxygen therapy for people who have suffered brain injuries.
‘It made sense to do something that would help Neon — oxygen therapy has been shown to help the brain heal. It’s not quackery,’ she says.
She had not told anyone where she had taken Neon — not even his father.
On Tuesday, Mrs Roberts failed to turn up at a High Court hearing set to decide Neon’s cancer treatment.
When she failed to appear at the High Court again the following day, the judge took the unusual decision of lifting reporting restrictions to improve the chances of locating the boy.
Doctors speaking at the hearing said Neon’s chances of surviving would be ‘dramatically reduced’ if he did not begin radiotherapy soon. The judge said she was ‘deeply concerned’ for the boy’s welfare.
The hunt for Neon and his mother began. By the early hours of Thursday morning — it is not known how — the police had located her at East Grinstead.
Mrs Roberts was awoken by the sound of police banging loudly on the front door, and then running upstairs and thumping on her bedroom door.
‘There were about four officers outside, shining a torch in my face. Neon was asleep, but I had to wake him and leave,’ she says.
Mrs Roberts and Neon were taken to a local hospital, where he was examined by doctors.
‘They had no idea what was going on, they were saying: “What’s wrong with him? He seems fine.” A few hours later he was discharged.’
But Mrs Roberts was not permitted to remain with her son. She was stunned to be told he was being placed in foster care. She watched powerless as two social workers, a woman and a man, left the hospital with her son.
‘The last words he said to me were: “Am I ever going to see you again, Mummy?”
‘Having him taken away was like losing my arm. I’d rather have lost a limb than go through that.
‘After everything Neon has been through, was it really necessary to put him through that as well?
‘The police wouldn’t tell me where he was being taken. The way they did all this was unbelievable. I was allowed to return to my friend’s house in East Grinstead and got straight on the phone to Ben.’
After hours of frantic calls, Mr Roberts was informed that afternoon that Neon was going to be returned to him at his home in Knightsbridge, central London.
‘Neon got back to Ben’s house at 9pm, which is far too late for a seven-year-old,’ says Mrs Roberts.
‘You have to ask whether they really have his welfare at heart. I had a short chat with him. He was OK, thankfully. But he should have been back home with his mother.’
It wasn’t just Mrs Roberts who was subjected to heavy-handed police tactics.
She had spent a few days staying with a friend, Kevin Wright, whose son was treated successfully for the same type of brain tumour as Neon several years ago. His house was raided in the hunt for the missing boy.
Naturally, I was keen to get advice from Kevin, because he also refused radiotherapy for his son and the boy has recovered.
‘The police found out I’d gone to stay with him. Fifteen armed officers turned up and searched his house as a police helicopter circled overhead. That is ridiculous.’
Yesterday, Mrs Roberts spent the day at the High Court, determined, as Neon’s mother, to research all treatment options for him before making a final decision about radiotherapy.
Explaining why she went on the run, she told the court: ‘I was forced into that situation. That was the very worst thing I could possibly have done.
‘I was given no choice. I thought if I brought him to the hospital they would not let me take him home, but would proceed with the treatment.
‘I feel that if you go ahead with the radiotherapy, we are depriving him of his talents. He is more likely to be infertile — no grandchildren.’
Afterwards, she said: ‘I’m exhausted — it’s a rollercoaster, but it went as well as it could and I am hoping for the best.
‘I can’t wait to see Neon — he is everything to me. He and Elektra are my world. I want to be able to say to them that I’ve done everything in my power to do the right thing for Neon.’
By NATALIE CLARKE,PAUL BENTLEY
http://www.dailymail.co.uk/news/article-2244853/Sally-Roberts-Am-I-going-Mummy-What-Neon-7-cried-snatched-social-workers.html
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Neon's cancer is back': Created: 28 Feb 2013
Neon's cancer is back':
By SHARON CHURCHER,AMANDA PERTHEN All By This Author - 10/12/2012Grandfather of boy, 7, abducted by his mother who wanted to block life-saving brain tumour treatment reveals his sudden relapse
The seven-year-old boy at the centre of a row over his cancer treatment is suffering from a recurrence of his brain tumour, his family said last night.
A High Court judgment on whether the mother of Neon Roberts could prevent him having radiotherapy was dramatically adjourned yesterday after the judge said there had been medical ‘developments’.
Sally Roberts, 37, has been battling with her estranged husband, Ben, 34, over the treatment Neon should receive following surgery to remove his tumour.
She objected to the youngster being given a course of radiotherapy, claiming that her son was ‘free’ of cancer.
But The Mail on Sunday has learned that the family were given the devastating news on Friday that Neon’s cancer had returned, meaning any legal ruling had to be delayed.
The boy’s paternal grandfather, Christian Roberts, a wealthy hotelier in Barbados, said the diagnosis came after the boy underwent an MRI scan on Friday.
Speaking at his Lone Star Hotel on the Caribbean island, a tearful Mr Roberts said: ‘I heard from my son on Friday, who took him for a scan, that the cancer is back. It is very hard because this is all happening so far away. I support my son. I want Neon to have whatever treatment is going to make him better.’
Asked if this includes radiotherapy, the 68-year-old replied: ‘Yes.’
The former actor said the child’s suffering had brought him to the verge of collapse. ‘The stress of all of this is overwhelming. I’ve not been feeling well. I’ve had difficulty sleeping.’
Neon, who underwent an operation for his tumour six weeks ago, was due to start life-saving treatment after the surgery.
But his mother, who sparked a nationwide police hunt last week when she went into hiding with her son, has argued that radiotherapy treatment would lower his IQ and possibly leave him infertile. Mrs Roberts, a DJ from New Zealand, took her battle to the High Court over fears that radiotherapy on Neon’s medulloblastoma tumour would ‘fry his brains’. Doctors argue that Neon could die within months without the treatment.
Mrs Roberts sparked a nationwide search after she disappeared with Neon from where they had been staying in Devon on Monday, but was found by police on Thursday.

She later argued in court that Neon appeared so well that the serious side effects of the radiotherapy far outweighed the threat to his health.
Speaking after yesterday’s hearing, Mrs Roberts’s brother Tony said Neon was set to undergo further tests.
He said: ‘It’s a very upsetting time for us. Neon is having more tests, and we won’t know the results until next week.’
The development meant that the judge had to delay his decision.
Mr Justice Bodey told the hearing: ‘It had been my intention today to give my judgment as part of Neon’s treatment for brain cancer on whether he should receive chemotherapy only or radiotherapy as well. Medical developments have now occurred regarding the possibility to receive said treatment for such therapies at the present time.
‘This has changed the medical landscape. Nature is no respecter of the courts.’
Mrs Roberts was found with Neon in East Grinstead, West Sussex, where she had been taking him for oxygen therapy.
The pair were discovered after the Family Division of the High Court took the unusual step of releasing the boy’s name and picture. Social workers temporarily put Neon, who has a twin sister Electra, in the care of foster parents, but he was later returned to his father, who has agreed to the radiotherapy.
Outside court, Mrs Roberts said: ‘Neon is having to undergo more tests. We don’t really know what’s going on at the moment.’
Her estranged husband, an IT consultant, added: ‘Neon had a scan on Friday and there are still tests to be done. I can’t make any further comment.’
However, his sister confirmed that Neon’s cancer had returned, saying: ‘Yes, that is correct. But we would rather not say anything more at the moment. We haven’t had a proper chance to talk to our father about it. Ben and I just want to look after each other and the kids.’
Mrs Roberts’s High Court battle has meant the treatment has been delayed, bringing it dangerously near to a 49-day deadline where radiotherapy must begin or the patient’s chance of survival is significantly reduced.
Last week, the court heard from Doctor A, who will be treating Neon, that Neon could die without treatment. Dr A said that research showed that radiotherapy offered him the best chance of survival and without it there was a strong chance of the cancer returning.
Dr A, who has already seen Neon, said: ‘A child who has had surgery for a brain tumour can appear well and healthy, but clinically the cancer could have returned.
‘There is a real need to commence treatment as soon as possible.’
Lawyers from the NHS Trust and council, who are tasked with looking after Neon’s interests, were supported by Dr A’s arguments that he should receive treatment.
Neon has been exposed to a range of alternative therapies since his operation, including oxygen treatment and an organic diet.
Mr Justice Bodey agreed to adjourn the case until December 18 to allow for medical reports to be updated.
http://www.dailymail.co.uk/news/article-2245261/Neons-cancer-Grandfather-boy-7-abducted-mother-wanted-block-life-saving-brain-tumour-treatment-reveals-sudden-relapse.html
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I know only too well why a mother fled with her son when he faced radiotherapy Created: 28 Feb 2013
Why I understand Sally Roberts's torment
I know only too well why a mother fled with her son when he faced radiotherapy
Having a child diagnosed with a deadly cancer is shattering. But when doctors take you into the small windowless rooms – where bad news always seems to be broken – and spell out the gruesome potential side effects of the treatment, then the horror of what is to be inflicted on your beloved infant’s otherwise perfect body becomes almost unbearable.
The grimmest scenario, of course, is that you will lose your child. But you soon learn that even if the doctors manage to save him or her, their ''cure’’ is likely to cause such damage that the child’s life will be immeasurably changed either in the long term (if you are lucky) or in whatever time is left. You feel you are giving permission for a mutilation.
Which is why I have such sympathy for Sally Roberts, the mother of seven-year-old Neon, who had a brain tumour. She was so horrified at the possible side effects of the post-surgery radiotherapy he was prescribed – including fits, visual impairments and personality changes – that she instinctively fled their home in Devon. This was despite the wishes of her estranged husband, who wants his son to undergo radiotherapy, and clinical evidence suggesting that radiotherapy (combined with chemotherapy) significantly improves survival rates.
Mrs Roberts and Neon emerged from hiding in Sussex last week following a nationwide search. On Saturday, a high court ruling on whether Neon should be treated against his mother’s wishes was delayed amid fears that he had relapsed. Now, Mrs Roberts says she will consider radiotherapy if it is confirmed that the tumour has returned. ''I don’t think I will have a choice,’’ she said. ''I was so hopeful that we could just get on with other less harmful treatments.’’
Such is the hideous, heartbreaking conflict of emotion and logic for the parents of a desperately ill child. We learnt that my lively, fun-loving daughter, Blossom Barrow, had stage 4 neuroblastoma (the worst level of this cruel childhood cancer of the nervous system) when she was four. My feelings of dread when I learnt of the recommended treatment were similar to those of Neon’s mother, though my reaction was less dramatic. The likely side effects during the nine-month treatment protocol included deafness (which hit her some time afterwards), loss of fertility, lopsided growth and kidney damage. My husband Andrew asked what would happen if we rejected these savage treatments. ''She will die in a matter of months,’’ we were told. We felt we had no option.
The fact that Blossom died in 2012, and not in 2007 when first diagnosed, was due to the care she received at London’s Great Ormond Street Hospital (GOSH). The five years when she grew from being a sweet toddler with an over-fondness for pink and Disney characters into an independent action girl, forever and cheerfully on the go – dancing, biking, riding, playing with friends, taking her rabbits for a walk, rearranging her Sylvanians, cooking, drawing and coming up with fantastical stories – were incredibly precious and I will be forever in GOSH’s debt for them.
There is no question that the medical, nursing and ancillary staff at the three hospitals that shared her care did all they possibly could for my daughter. It was only during those weeks when her life was drawing to a close that I wished they had listened more closely to Blossom, to me and to her father. But they didn’t and the result was a slow response to galloping disease and no pain relief until two days before she died.
It is a sad fact that more children treated at GOSH die each year than in any other medical centre in Europe – about 140, with 70 or so from cancer. That’s because the hospital takes on the most complex and life-threatening conditions, including those childhood cancers with high death rates. Many of these children suffer considerable pain towards the end, and it makes sense that a national centre for pain relief and palliative care for children should be based at GOSH, which has three palliative care consultants (out of just seven in Britain). In 2008, the Department of Health provided £30 million to improve children’s palliative care services. However, despite these developments, treatment is based either on individual doctors’ experience, rather than proven research, or on unsuitable adult models.
When a child is diagnosed with a life-threatening or life-limiting disease at GOSH, he or she is assigned two nurses from the palliative care team. Our first two had both left by the time Blossom’s neuroblastoma returned in March 2011, after three years in remission. No one was more surprised than Blossom herself. She was in terrific spirits and health, hugely enjoying her life as a schoolgirl.
We were put in touch with two new palliative care nurses, along with a wonderful community team. Two months later, after further tests, Blossom embarked on a new course of chemotherapy which successfully shrank her tumour, although her platelets (the white blood cells responsible for clotting) took a long time to recover, and she minded having no hair at the age of eight far more than she had at four.
After a summer respite, the cancer started to grow again. Tough MIBG (radioactive) treatment was followed by a stem-cell transplant. It was a gruelling period, living between hospitals (GOSH, University College Hospital and our local hospital, Chelsea and Westminster) from November to mid-January. Blossom got every infection going, but she bore it with her usual fortitude. The main tumour was shrunk to a degree that meant it could be surgically removed. However, her platelets were also suppressed to such a degree that the operation had to be postponed repeatedly.
Her incredibly supportive consultant at GOSH had, meanwhile, enrolled Blossom for a course of immunotherapy in Germany. I was so grateful for all these expensive treatments, but desperately worried that the tumour was still growing.
In March she began to complain of a sore leg – not that she let it interfere with her ballet. It didn’t clear up, and a month before she was due to go to Germany, she had an X-ray at Chelsea and Westminster, to be followed by an MRI scan. The X-ray appeared normal; the MRI was never scheduled. (It was only after Blossom’s death that we learnt, to our horror, that it had been cancelled by her consultant at Chelsea and Westminster, because her pain was believed to be muscular).
I grew increasingly frantic as Blossom – never a complainer – became distressed by the pain in her leg. She was examined at GOSH several times, but doctors insisted that it wasn’t bone pain. I rang the palliative care nurses for advice and was told to give her codeine, which she’d never liked. It was not the help we required. I sent distressed emails, but felt that no one was listening to us.
By the time she and her father left for Greifswald, Blossom – who wouldn’t miss a day at school – was in too much pain to take part in playground games, and reluctant to walk without using her scooter. Preliminary scans there revealed what we had long feared, namely that the leg pain was due to a growing cancer. Blossom had to come home. Told that she no longer needed to continue with drug treatment in preparation for the immunotherapy she’d been due to undergo, she protested ''I’m not a quitter’’.
Over five days in hospital in Germany, she was given no pain relief at all. I still don’t understand why. By now, she was in a wheelchair. For her journey back to London she was given fentanyl (a powerful opiate analgesic) skin patches to help her bear torturous pain – but in such quantity that we were instructed by our palliative care nurse to take them off the second we touched down.
Fentanyl is notoriously toxic to kidneys, and hers were already much weakened. Blossom started to go into renal failure. She was in agony by the time she got home and could finally be given painkillers – though characteristically, she still demanded a supper of frankfurters which she had been disappointed not to eat in Germany.
Next day she went to Chelsea and Westminster for a check-up, and Andrew and I went to GOSH for a briefing. The doctor (not her usual consultant) said she could have months to live. That day, Blossom was barely conscious, and her father and I were told that her body was beginning to close down.
From this point on, both the palliative care team and the community team were unstinting in their support. A special bed and oxygen were delivered to our flat that evening. Miraculously, Blossom’s favourite nurse, José, was in charge of her at Chelsea and Westminster, and although the doctors advised us to wait till morning, they eventually agreed he should help us take her home in the middle of the night.
Blossom woke briefly and inquired ''Am I going home because I’m ill or because I’m better?’’ And when the ambulance men carried her in she asked in wonder, ''Where am I – is it home?’’ The next day she didn’t wake. The community team arrived, as did the GOSH palliative care nurse, who gave Blossom painkillers, and they sat with us peacefully and lovingly, leaving about half an hour before she died, shortly after 5pm on May 3.
The shocking speed of her death surprised us all: doctors, teachers, friends, our families. We had no idea that she had so little time left. Her consultant was gracious enough to admit a mistake. ''We were expecting a bone lesion and not a [tumour] mass that went into her buttock. She seemed deceptively well – we wouldn’t expect a child with her burden of disease to be scootering around.’’ She also promised that in future they would pay greater attention to parents’ concerns.
And yet… and yet… even if the doctors had listened to us at that late stage, it seems unlikely that the outcome would have been very different. Blossom would most probably have been bedridden and aware of how gravely ill she was, which, thankfully, she never was. She would, however, have had the pain relief she deserved.
The case of Neon Roberts is different, but I believe his mother has a strong instinct for what is best for him. And I pray that his doctors listen to her as well as considering his clinical needs.
By Annabel Freyberg
http://www.telegraph.co.uk/health/children_shealth/9734914/Why-I-understand-Sally-Robertss-torment.html
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Why do we accept that So Many Small Children suffer Brain Tumours? Created: 28 Feb 2013
A High Court ruling on whether Neon Roberts should receive treatment against the wishes of his mother Sally, was delayed on Saturday amid fears his cancerous brain tumour had returned.
Mr Justice Bodey told a specially convened hearing there had been medical "developments" regarding the young boy’s ability to receive treatment and adjourned the case pending further medical reports.
While he only stated there had been a change overnight in the boy’s “ability to be treated with such therapies at this present time”, relatives later said that Neon’s cancer, called medulloblastoma, had returned.
But tonight Mrs Roberts, 37, confirmed that while scans conducted on Friday had uncovered “something”, doctors were unsure at this stage if it was cancer.
Mrs Roberts, who left her home in Devon and fled to Sussex to prevent Neon from receiving radiotherapy, told the Times that she would consent to radiotherapy treatment should it be found the cancer had returned.
But if it is a false alarm, she will instead take her son to Germany for pioneering treatment instead. “We went for a scan and they did see something,” said Mrs Roberts, a former leading disc jockey.
“They weren’t too sure what it was. Doctors are checking and we are hoping it’s scar tissue or something else.
“When I saw a headline … saying Neon’s cancer is back, it shocked me. That’s not true because we just don’t know.”
The mother of two added to the Daily Mail that the scans had uncovered what appeared to be a one centimetre mass.
"He [the doctor] called again and I spoke to him. 'Something is showing up', they said. But they were very vague.
"They said, 'we can see something and we need to do another scan on Monday to determine what it is'. He was very hopeful everything is still going to be OK."
Neon is due in hospital this morning to have another MRI scan and a lumbar puncture to test his spinal fluid.
Should the cancer have returned, he is likely to have to have another operation before undergoing radiotherapy and chemotherapy.
Mrs Roberts, who provoked a nationwide hunt when she went missing last week, has insisted she is not a “bonkers mother” because she opposed her “vibrant” son receiving radiotherapy treatment for his tumour.
When she disappeared, she was in the middle of a court battle with the child’s father Ben Roberts, who agrees with doctors that their son’s chances of survival will be greatly increased with treatment.
Doctors have claimed that without any form of treatment, the little boy, who had his cancerous brain tumour removed in October, will die.
Mrs Roberts, who is originally from Auckland, New Zealand, added: “After Neon’s operation six weeks ago, when the tumour was taken out, they had another operation booked in immediately because they thought there was something else there.
“Thankfully they were wrong and I’m just hoping it’s the same this time.”
Mrs Roberts, who is also known a Sally Lees, told the judge on Friday that she feared radiotherapy would do long-term harm to Neon and accept only chemotherapy.
If doctors prove the cancer has returned, Mrs Roberts admitted she would back down and agree with doctors and her estranged husband, 34, in consenting to both forms of treatment.
“I don’t think I will have a choice,” she told the newspaper. “I was so hopeful that we could just get on with other less harmful treatments. But I will be backed into a corner.”
Last week, the court heard how her legal battle was “principled, reasonable and in the best interests of Neon”. She took her drastic action after the procedure was described by one doctor as “frying his brains”.
Before Friday’s news that the cancer may had returned, the mother described how her son had become a “vibrant, healthy” little boy but that radiotherapy would threaten his IQ, increase the risk of strokes and infertility and potentially leave him “disabled”.
Mr Roberts, an IT consultant from Knightsbridge, west London, has also aired concerns about the treatment, telling the judge that he was "concerned" and "anxious" about the medical advice but agreed to follow it.
The judge, who was being asked to rule as a last resort on whether Neon should receive the life-saving treatment, described the case as the “stuff of every parent’s nightmare”.
The case returns to court on December 18.
http://www.dailymail.co.uk/home/search.html?sel=site&searchPhrase=neon+roberts
Daily telegraph
http://www.telegraph.co.uk/health/healthnews/9733803/Sally-Roberts-runaway-mother-will-allow-radiotherapy-if-sons-cancer-is-back.html
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