A teenager whose rare cancer came back after five years and started growing again during the coronavirus lockdown has told how ‘there’s no point being down about it’ – despite her uncertain prognosis.
Rosie Rickards, 18, from Hampshire, was diagnosed with choroid plexus carcinoma, a rare form of brain tumour which left her almost totally blind, in 2013.
Aged 11, she had a ten-hour operation to remove the tumour before having chemotherapy and radiotherapy to give the best chance of the cancer not returning, but in 2018, just eight days before she was due to sit her GCSE exams, the cancer returned.
Further treatment kept the size of the tumour stable until May of this year, when it started growing once again.
Rosie has since had further radiotherapy but now faces an uncertain wait for an MRI scan to determine whether this has had any impact on the size of the tumour – which could leave her paralysed if it continues to grow.
Rosie Rickards (pictured), 18, from Hampshire, whose rare cancer came back after five years and then started growing again during the coronavirus lockdown, has remained relentlessly positive despite her uncertain prognosis
The teenagers diagnosed with Choroid plexus carcinoma, a rare form of brain tumour which left her almost totally blind, in 2013. Pictured, with her sister Ruby, 15
‘There’s no point being down about it because otherwise I would just be crying all day,’ explained the teenager. ‘I may as well be happy rather than be like “my life is so awful”.
Rosie was first diagnosed after she started suffering with severe headaches, feeling sick and needing to sleep all day.
Her family also noticed she would be staring in the wrong place while talking and would speak nonsense and then not remember what she had said.
Rosie then visited her GP, only to be told several times that she was suffering from migraines or that the headaches were caused by hormones because she was 11 and going through puberty.
The doctor did refer Rosie to a specialist, but before her appointment she ended up in Accident and Emergency at Frimley Park hospital after her symptoms got dramatically worse.
‘I was being sick and I was really tired, and I kept fainting so my dad took me to the A&E,’ Rosie said. ‘When he took me in I couldn’t use my legs, he was dragging me along the floor.
Aged just 11, Rosie had a ten-hour operation to remove the tumour and then had chemotherapy and radiotherapy to give the best chance of the cancer not returning. Pictured, Rosie at a wedding shortly before her first diagnosis
The optimistic teenager (pictured) in hospital shortly after her surgery. Further treatment kept the size of the tumour stable until May of this year, when it started growing once again
Rosie was put into a wheelchair and then given a MRI scan, which revealed she was suffering from a tumour. She was then told she needed a ten-hour operation to remove the tumour from her brain.
Speaking of the shock of her diagnosis, Rosie said: ‘I thought, “why can’t it be someone else?” They just told me I had a lump in my head.
‘Being eleven I didn’t know what the word was so I thought it’s alright, they’ll take it out and I’ll be fine.
WHAT IS A CHOROID PLEXUS CARCINOMA?
* Choroid plexus carcinomas occur within the ventricles of the brain and can block the cerebro-spinal fluid from circulating and draining, causing pressure to build up in the skull.
* Choroid plexus carcinoma’s occur most often in one year olds, where the signs of the raised intracranial pressure may be vomiting and lethargy (drowsiness) or your child being unable to look upwards. Their head size may also grow quickly.
* Choroid plexus carcinomas are a high grade (grade 3), fast growing tumour. There is an association with the genetic condition, Li-Fraumeni syndrome.They are different from choroid plexus papillomas.
* The first symptoms of a choroid plexus carcinoma may, therefore, be pressure headaches, particularly in the mornings.
* Treatment involves removing as much of the tumour as possible followed by chemotherapy and, sometimes, radiotherapy. This partly depends on the age of the child, as health professionals try not to give radiotherapy to children under 3 years.
(Information from The Brain Tumour Charity)
To find out more about CLIC Sargent, click here.
‘I think I was upset. I went from hanging out with my friends every day to being stuck in hospital all of a sudden I had to have this major surgery,’ she added.
Her mother Claire, 43, who is separated from Rosie’s father, said the hardest part of the ordeal for her was watching her daughter get wheeled down to the operating theatre for her operation.
‘We didn’t know if we would see her again,’ she said.
Even though the operation was ultimately a success and the tumour was removed, it was not enough to save her sight.
Rosie is completely blind in her left eye and has some vision in her right eye, but not enough to ‘drive or read a book’.
She and her mother said she went blind after the tumour prevented fluid from draining from her brain, which in turn damaged her optic nerve.
Choroid plexus carcinoma usually affects children under two and impacts the brain tissue which secretes cerebrospinal fluid.
As it grows, the tumour can block fluid passages, which leads to a build-up of liquid in the brain – known as hydrocephalus – which is what happened in Rosie’s case.
The tumour can also cause irritability, nausea or vomiting and headaches, all of which Rosie had.
The teen said the first thing she asked after waking up from her operation was ‘how am I going to go to school?’ and was promptly told by her mother that she wouldn’t be able to go.
After the operation, Rosie had intensive chemotherapy and radiotherapy to give the best chance of destroying all of the cancer cells.
Things were made harder by the fact that she was on a ward with very young children and did not have the company of anyone her own age.
With the support of a social worker from children and young people’s cancer charity CLIC Sargent, Rosie did meet other young people who had had a similar experience, helping to boost her confidence.
However, the young woman said losing her sight was the hardest thing of all.
‘People always say to me “you’ve been through so much treatment” but the thing that I’ve found hardest at the time when I was 11 was my eyesight because I was out with my friends all the time then all of a sudden I couldn’t,’ she explained.
She ended up missing nearly all of her first year of secondary school – year 7 – and had to have home tutors.
Yet the treatment appeared to have been a success and so Rosie, who thought she had been cured, was able to continue her life and school career.
But five years later, in 2018 and just eight days before she was due to sit her GCSEs, Rosie began getting strange symptoms once more.
She said: ‘I couldn’t move fingers on my left hand. I couldn’t walk without bumping into someone. We went to Winchester hospital, I remember this doctor saying to me “can you walk to that sofa” and I said I just can’t.’
In 2018, just eight days before she was due to sit her GCSE exams, the cancer did come back and further treatment kept the size of the tumour stable until May of this year, when it started growing once more. Pictured, Rosie
Rosie has since had further radiotherapy but now faces an uncertain wait to find out with an MRI scan if this has had any impact on the size of the tumour – which could leave her paralysed if it continues to grow. Pictured, with her sister and mother, Claire, 47
The young woman went on to add she could not move her little finger when trying to touch type at school and members of staff were asking her ‘what is wrong with your fingers?’
Her mother also said Rosie would be sitting on the sofa and her leg would suddenly rise. Claire added her daughter, who had had a clear brain scan just a couple of months previously, was at times ‘walking like Bambi’ with her legs splayed.
From observing her daughter’s symptoms, the mother believed that she had a spinal tumour.
The mother recalled, ‘I kept ringing the hospital and saying something’s wrong but they said ‘no it’s fine because she’d had a brain scan that was clear.’
‘As a mum, you just know. I kept on and on and on at them,’ she added.
Finally, the mother’s persistence paid off and Rosie was rushed to hospital as an inpatient, where a MRI scan revealed she had a spinal tumour, of the same type which she had had in her brain.
It is believed the cancer cells travelled from her brain via her spinal fluid.
Her mother said of the new diagnosis, ‘I couldn’t believe it was happening again. You never relax but I was just in shock. Also, I knew how hard it was the first time and it’s stomach-churning to know you’ve got to go through that again.’
Rosie agreed that the second diagnosis was ‘hard’ and that she had been looking forward to going to college. But she added, ‘I did think I had been through it before, I knew what to expect.’
Because of the return of her cancer, Rosie was unable to sit her GCSEs and so a mixture of her predicted grades and mock results were used instead.
Rosie said that whilst she got ‘passes in most of them’, she thinks she would have performed better if she had been able to sit them.
Remarkably, the teenager – who was also unable to take her GCSEs because of her disease – said there is ‘no point being down’ about her situation
Her further treatment involved more chemotherapy as well as the trial of a new drug called Aftatinib.
According to Cancer Research UK, the drug works by blocking signals coming from particular proteins which tell a cancer to divide and grow. The hope is that this will slow down or stop the cancer from growing.
However, whilst in Rosie’s case the new drug and the renewed chemotherapy did shrink her tumour, her kidneys struggled with the new regime and so she lost an ‘unreal’ amount of weight and had to stop taking Aftatinib.
Fortunately, the treatment was enough to stabilise the tumour until May – when lockdown measures were in full force – when it started growing once again.
‘I got offered a scan,’ Rosie explained. ‘I thought I’ll take it and I had this feeling it had started growing back and then obviously the scan said it did.’
Claire said the further bad news was especially hard because much of hers’ and Rosie’s extended family – including her grandparents, aunties and cousins – live in Weymouth, which is around 75 miles from Andover.
‘You just want a hug and you can’t have one,’ her mother said. ‘It has been very isolating this time, even worse, because usually if you get bad news then people do turn up at your house and we haven’t had that, we haven’t had someone round for a cup of tea.’
In June, Rosie, who has a younger sister named Ruby, 15, had 15 days of radiotherapy to try to treat the tumour but is unsure how successful it has been.
She and her mother are still anxiously waiting to receive a date for an MRI scan because medics need to wait for swelling caused as a side effect of the radiotherapy to diminish.
The wait is made worse by the knowledge that if the tumour continues to grow it could leave Rosie paralysed. Her mother said she is ‘on their case’ to ensure the scan happens soon but Rosie remains characteristically optimistic.