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In Our Hearts

Less than 20% of those diagnosed with a brain tumour survive beyond five years

The diagnosis of a brain tumour is devastating for the patient, their family and friends. 

For these people life will never be the same again.

These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.

We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
Anon

You are forever in our hearts.                                                         

Recently published stories

Ieuan Jones

Based in Dubai with his wife, Kelly, and a successful trainer for Emirates airline, Ieuan displayed very uncommon symptoms ahead of the discovery of his tumour.

With the devastating news that he had an aggressive GBM, Ieuan and his family relocated back to Wales, and he lost his fight less than two years later.

“That Christmas, I bought Ieu a star.  We named it “Daddy’s Star” and we told Sienna that when he was no longer around, she could look up in the sky and the brightest star would be the one he was sitting on.”

His wife, Kelly, tells Ieuan’s story…

I first met Ieu in 2005 when he was 33 and I was 27.  We were both working for Virgin Atlantic, and he trained me as cabin crew.  At the time, I thought he was a charming, charismatic man.

A year later, I was offered a role in the Virgin Atlantic training team myself, although on the safety side rather than service training as Ieu was doing.  It was part of the same overall team, so we got to know each other well.  Seeing each other every day, romance blossomed and we eventually got together in 2008.

As we had known each other for a while, once we were together officially we both knew it was meant to be. A few months later, Ieu moved in with me, we lived in Horsham, a short distance from Gatwick Airport, but also not too close.

We both left Virgin Atlantic in 2009, and took on new jobs with different companies.  He proposed almost a year to the day after we started dating, in a restaurant.  We thought our table was quite secluded, but it turned out everyone could see him down on one knee and the whole restaurant burst into applause.

We married at Burford Bridge Hotel in Dorking on 14th July 2011.  In the months leading up to the wedding, we had been busy discussing our future, and decided to relocate to Dubai.  I’d been there several times before, and he was happy to take my word for it that it was a lovely place to work. We moved in September and Ieu took a job at Emirates, in their training department.

During the first couple of years we loved living in Dubai. Ieu would indulge his golf hobby from time to time, and in 2013, our daughter Sienna was born.  Ieu was so thrilled to be a dad.  We knew we were having a girl as I was desperate to find out before the birth.  Sienna had quite a traumatic birth and was born by an emergency C-section. Ieu, being Ieu, stepped up to the challenge of being a daddy as well as looking after me. He was brilliant. 

We moved to a villa in October 2014, and shortly after he began to complain of pins and needles in his right foot.  As he was never ill – I think he only had one day off sick from Emirates in three years – we put it down to a muscle strain or a pinched nerve from him carrying boxes during the move.

The pins and needles continued, and then it started in his right calf muscle.  Within three weeks the foot and calf were numb, he could still walk, but if I pressed hard on the area, he couldn’t really feel it.  It was beginning to worry both of us that it could be something more than muscular, so we consulted a GP in Dubai.

In Dubai, medical care is private, so it all happens really fast.  The GP referred Ieu for an MRI, and he ended up having three – one on his foot, then his hip and then his entire spine.  All three of them came back clear, so we were no nearer to knowing the cause than before.

At the time, they had also referred him to a neurologist, and as a precaution he ordered an MRI scan on his head for 4th December.  Less than a week later, Ieu collapsed at work with a seizure and was rushed to hospital.  He didn’t lose consciousness, but it was still very frightening and completely out of the blue because we still thought he was well.

The Saturday night before the seizure, Ieu had been complaining of his leg twitching and was almost looking forward to the MRI so that he could find out why it was spasming in that way.  We still put it down to a trapped nerve.

At the hospital in Dubai, they scanned him straight away and found the brain tumour.  The neurosurgeon seemed quite positive, and told us that from the look of the MRI that it was probably a low-grade tumour, and also thought it might be a secondary cancer so ordered another full body MRI, which was clear apart from the brain tumour.

We couldn’t understand it at all.  Ieu hadn’t had any of the normal brain tumour symptoms, no headaches, no blurred vision, no falls.  How could a twitching leg be caused by a tumour?  He was discharged with Keppra medication for his seizures, and steroids to reduce the swelling in his brain, with an appointment in a few weeks’ time to have a craniotomy.

Something changed in me when I realised Ieu was ill.  I had always been a very driven career woman, but now I knew that my family had to come first.  I started my own business in the health and wellness industry, and it grew into something very successful – I still have a team in Dubai working for me!

For Christmas, we decided to fly home to North Wales to celebrate Christmas with Ieu’s family.  I suggested to Ieu that while he was back home, that he could go for a round of golf with his Dad, but he said he wasn’t up to it.  His leg was still causing problems, and then the twitching and numbness started to spread upwards through his body.  We made an emergency call to Dubai, and the neurosurgeon advised to take a larger dose of Keppra.

The week we were in North Wales, Ieu really struggled to walk.  It was almost as if he wasn’t in control of his leg, and almost had to manually move it because there was such a lack of movement.  We clung to the hope that the craniotomy in the coming weeks would sort it out.

On arriving back in Dubai, we had a call from the neurosurgeon cancelling the follow up appointment. The appointment had been postponed due to the surgeon being out of the country and was to be rearranged for a few weeks’ time. I took to the internet to research and find another specialist, and managed to find someone that could see us that very same day.  He looked at the MRI scans, and gave us a different opinion, saying that he wasn’t sure if it was a low-grade tumour, and scheduled an operation for five days’ time.

It was only at this point that we realised he shouldn’t be driving. The first neurosurgeon hadn’t told us the rules for Dubai, and it wasn’t until the second consultation that Ieu was told categorically not to be behind the wheel of a car, due to the risk of further seizures.

Ieu had his tumour surgery on 4th January 2015, it was a very long and stressful day.  Unfortunately, only part of the tumour could be removed as the surgeon was concerned that removing all of it would leave Ieu paralysed.  He wanted him to have quality of life post-surgery, so decided that what was left would be treated with chemotherapy and radiotherapy.  We still didn’t know at this point what the tumour was, or how serious.

They moved him to intensive care afterwards, where he remained for five days.  While recovering, his kidneys started to fail, and he began to hallucinate.  Thankfully they were able to treat the kidney problem, and after being moved to a general ward, he was discharged another week later.

We discovered that there is only one neuro-pathologist in Dubai, so it took a little while to get the results of the biopsy.  When Ieu was discharged from hospital after 12 days, the paperwork they gave him finally gave us the answer.  It was a Glioblastoma Multiforme (GBM), grade 4, the most aggressive brain tumour.

Ieu was convinced he would beat it, he invested a lot of time in researching GBM and although the general prognosis was 12 to 14 months, he also found cases of people living for ten years or more.  He remained positive and upbeat – as he had always been – and shared regular updates on social media so our friends and family could see how well he was doing.

Ieu underwent chemotherapy and radiotherapy simultaneously for a period of 6 weeks, 5 days a week, which carried on until July.  During this time, we reassessed our lives, decided that enough was enough and moving back to Wales was our best option.  We had Sienna to think about, and we felt that being back amongst our family would be the best thing for all of us.

We flew from Dubai back to the UK on 4th August.  As we settled into our new home, Ieu said he didn’t feel very well and went to bed early.  The next day he had a raging fever and was diagnosed with pneumonia.  He was taken to Bangor Hospital for treatment, and stayed there for a week.

Ieu was then referred to a new neurooncologist in North Wales.  Friends and family thought we were mad, swapping private healthcare in Dubai for the NHS, but the level of care back home was amazing. In Dubai, it’s much more transactional and there is little support once you’ve been treated, so we found that the care and attention from the NHS staff to be just what he needed.

He began another protocol of chemotherapy and continued on that until there was no more they could do.  He had an MRI scan in December 2015 and they found that the GBM tumour was now slightly bigger.  He asked them how long he had got left, and they said it was probably only six months.  We thought that seemed like lots of time, and secretly hoped they were being pessimistic and he had longer.

That Christmas, I bought Ieu a star from Sienna.  We named it “Daddy’s Star” and we told Sienna that when he was no longer around, she could look up in the sky and the brightest star would be the one he was sitting on.

Unfortunately, the tumour continued to affect his health adversely, and he deteriorated pretty quickly.  He had a few falls and the continued use of steroids had affected his bone density, so his spine was beginning to crumble.  Fortunately, I had continued to run my business from our new home in Wales, so that meant I was at home to look after him.

We both knew Ieu’s condition was getting worse, so in April 2016 we decided to renew our wedding vows, back in the same hotel in Dorking.  By this time, he was now in a wheelchair, but we didn’t care.  It meant so much to us to have that day and get all our friends and family together again.  It was Ieu’s way of getting everyone together again, possibly for the last time.  Sienna was a bridesmaid and loved every moment of being in a beautiful dress.

Within three weeks of our marriage renewal, he could no longer sit upright and became bed-bound.  He also became very confused and forgetful, he had always been very military style with his medication, but now struggled to remember if he’d taken it or not.  He also found his motor skills failing, with something like a text message impossible for him to type out.

Ieu was due to have another MRI scan at the beginning of May, but by then I couldn’t get him there.  He was completely bed-bound, and now had a bed downstairs in the house.  An ambulance came to take him to hospital, but in the end, we needed the help of paramedics to get him there.

The scan delivered devastating news.  The GBM had almost doubled in size since December, and was now encroaching on the right side of his brain.  This was the reason that his speech and memory were getting so bad.  They delivered the prognosis of two to six weeks, and our world crumbled.

Due to Ieu being bed-bound, I had to make the sad decision to have him moved to a hospice in Llandudno on 20th May.  I was no longer able to care for him at home on top of looking after Sienna, who by now was two three years old.  She knew that Daddy was poorly, we’d told her all along that he had a ball in his brain that was making him ill.  The day before Ieu passed away Sienna visited him at the hospice.  It was the first time Ieu smiled that day when he heard her voice.  I remember her kissing him on the head and helping him drink from a beaker.  It was as beautiful as it was heart-breaking to watch. 

Over that weekend, Ieu seemed ok.  He was relatively joyful when friends visited him. He struggled to speak, and his confusion meant that answering questions from the doctors was difficult.  By Monday, he had a raised temperature, and by Tuesday he had pneumonia again.  The hospice advised us that he could only have intravenous antibiotics in hospital, but his fear of dying in hospital meant that he opted for oral antibiotics instead.  He was also being given morphine and medication for anxiety, but it was difficult for them to administer because his swallow reflex was now failing.

Ieu drifted in and out of consciousness, and that night I stayed with him.  I had resigned myself to him not recovering and this probably being the end, so I wanted to be there with him.  That night I listened to his breathing and it was a horrible sound, like he was drowning.

On Wednesday 25th May, the nurses came in to see him at 6am but he was unable to communicate with them.  His mum and sister arrived, and at 9am we were moved into the family room while the nurses administered his medication.  They left his room and told the three of us we could go back in.  In those precious few seconds between the nurses leaving and us arriving, Ieu slipped away.  I believe that he died at that point because he was trying to protect me from witnessing it.  With my first aid training, my first instinct was to try and give him CPR, but I knew that he had asked not to be resuscitated.

We held his funeral on 10th June, and 150 came, including some who flew in from Dubai.  Ieu was so loved, and in accordance with his wishes, I organised for a cardboard coffin in the colours of the Welsh flag, with the Millennium Stadium on top.  We had his wake in his favourite pub in Caernarfon, and for that part of the funeral Sienna was there.  I didn’t want her to have bad memories, but at the wake we were celebrating his life, so it seemed fitting she should be there.

Sienna and I talk about Ieu all the time.  She likes to send helium balloons up to Daddy’s Star, and by now he must have about a hundred of them!  We look for his star in the sky, and she has coped amazingly well.  I’ve had advice from child bereavement counsellors, and they tell me that children are resilient and brave, and Sienna certainly is.  She is just like her Dad, he just got on with his illness, and she just gets on with him no longer being here.

Until Ieu was diagnosed, I had no idea of the shocking statistics for brain tumours.  Not only are they the biggest cancer killer of children and adults under 40, but the money that goes into researching a cure is woefully low.  It is wrong that only 1% of the national spend on cancer research has been allocated to this devastating disease, because Ieu was just 43 when he died, and he should have had his whole life ahead of him, with his family.

Ieu’s friend Johnathan is running the London Marathon this year to help raise funds for research, and I want to share Ieu’s story to help him, and to raise as much awareness as I can.  If he’d had a different cancer, he might be here now.  Research into brain tumours is not just necessary, it’s vital.

Kelly Jones
January 2017

Ieuan Jones

All stories

Ieuan Jones

Based in Dubai with his wife, Kelly, and a successful trainer for Emirates airline, Ieuan displayed very uncommon symptoms ahead of the discovery of his tumour.

With the devastating news that he had an aggressive GBM, Ieuan and his family relocated back to Wales, and he lost his fight less than two years later.

“That Christmas, I bought Ieu a star.  We named it “Daddy’s Star” and we told Sienna that when he was no longer around, she could look up in the sky and the brightest star would be the one he was sitting on.”

His wife, Kelly, tells Ieuan’s story…

I first met Ieu in 2005 when he was 33 and I was 27.  We were both working for Virgin Atlantic, and he trained me as cabin crew.  At the time, I thought he was a charming, charismatic man.

A year later, I was offered a role in the Virgin Atlantic training team myself, although on the safety side rather than service training as Ieu was doing.  It was part of the same overall team, so we got to know each other well.  Seeing each other every day, romance blossomed and we eventually got together in 2008.

As we had known each other for a while, once we were together officially we both knew it was meant to be. A few months later, Ieu moved in with me, we lived in Horsham, a short distance from Gatwick Airport, but also not too close.

We both left Virgin Atlantic in 2009, and took on new jobs with different companies.  He proposed almost a year to the day after we started dating, in a restaurant.  We thought our table was quite secluded, but it turned out everyone could see him down on one knee and the whole restaurant burst into applause.

We married at Burford Bridge Hotel in Dorking on 14th July 2011.  In the months leading up to the wedding, we had been busy discussing our future, and decided to relocate to Dubai.  I’d been there several times before, and he was happy to take my word for it that it was a lovely place to work. We moved in September and Ieu took a job at Emirates, in their training department.

During the first couple of years we loved living in Dubai. Ieu would indulge his golf hobby from time to time, and in 2013, our daughter Sienna was born.  Ieu was so thrilled to be a dad.  We knew we were having a girl as I was desperate to find out before the birth.  Sienna had quite a traumatic birth and was born by an emergency C-section. Ieu, being Ieu, stepped up to the challenge of being a daddy as well as looking after me. He was brilliant. 

We moved to a villa in October 2014, and shortly after he began to complain of pins and needles in his right foot.  As he was never ill – I think he only had one day off sick from Emirates in three years – we put it down to a muscle strain or a pinched nerve from him carrying boxes during the move.

The pins and needles continued, and then it started in his right calf muscle.  Within three weeks the foot and calf were numb, he could still walk, but if I pressed hard on the area, he couldn’t really feel it.  It was beginning to worry both of us that it could be something more than muscular, so we consulted a GP in Dubai.

In Dubai, medical care is private, so it all happens really fast.  The GP referred Ieu for an MRI, and he ended up having three – one on his foot, then his hip and then his entire spine.  All three of them came back clear, so we were no nearer to knowing the cause than before.

At the time, they had also referred him to a neurologist, and as a precaution he ordered an MRI scan on his head for 4th December.  Less than a week later, Ieu collapsed at work with a seizure and was rushed to hospital.  He didn’t lose consciousness, but it was still very frightening and completely out of the blue because we still thought he was well.

The Saturday night before the seizure, Ieu had been complaining of his leg twitching and was almost looking forward to the MRI so that he could find out why it was spasming in that way.  We still put it down to a trapped nerve.

At the hospital in Dubai, they scanned him straight away and found the brain tumour.  The neurosurgeon seemed quite positive, and told us that from the look of the MRI that it was probably a low-grade tumour, and also thought it might be a secondary cancer so ordered another full body MRI, which was clear apart from the brain tumour.

We couldn’t understand it at all.  Ieu hadn’t had any of the normal brain tumour symptoms, no headaches, no blurred vision, no falls.  How could a twitching leg be caused by a tumour?  He was discharged with Keppra medication for his seizures, and steroids to reduce the swelling in his brain, with an appointment in a few weeks’ time to have a craniotomy.

Something changed in me when I realised Ieu was ill.  I had always been a very driven career woman, but now I knew that my family had to come first.  I started my own business in the health and wellness industry, and it grew into something very successful – I still have a team in Dubai working for me!

For Christmas, we decided to fly home to North Wales to celebrate Christmas with Ieu’s family.  I suggested to Ieu that while he was back home, that he could go for a round of golf with his Dad, but he said he wasn’t up to it.  His leg was still causing problems, and then the twitching and numbness started to spread upwards through his body.  We made an emergency call to Dubai, and the neurosurgeon advised to take a larger dose of Keppra.

The week we were in North Wales, Ieu really struggled to walk.  It was almost as if he wasn’t in control of his leg, and almost had to manually move it because there was such a lack of movement.  We clung to the hope that the craniotomy in the coming weeks would sort it out.

On arriving back in Dubai, we had a call from the neurosurgeon cancelling the follow up appointment. The appointment had been postponed due to the surgeon being out of the country and was to be rearranged for a few weeks’ time. I took to the internet to research and find another specialist, and managed to find someone that could see us that very same day.  He looked at the MRI scans, and gave us a different opinion, saying that he wasn’t sure if it was a low-grade tumour, and scheduled an operation for five days’ time.

It was only at this point that we realised he shouldn’t be driving. The first neurosurgeon hadn’t told us the rules for Dubai, and it wasn’t until the second consultation that Ieu was told categorically not to be behind the wheel of a car, due to the risk of further seizures.

Ieu had his tumour surgery on 4th January 2015, it was a very long and stressful day.  Unfortunately, only part of the tumour could be removed as the surgeon was concerned that removing all of it would leave Ieu paralysed.  He wanted him to have quality of life post-surgery, so decided that what was left would be treated with chemotherapy and radiotherapy.  We still didn’t know at this point what the tumour was, or how serious.

They moved him to intensive care afterwards, where he remained for five days.  While recovering, his kidneys started to fail, and he began to hallucinate.  Thankfully they were able to treat the kidney problem, and after being moved to a general ward, he was discharged another week later.

We discovered that there is only one neuro-pathologist in Dubai, so it took a little while to get the results of the biopsy.  When Ieu was discharged from hospital after 12 days, the paperwork they gave him finally gave us the answer.  It was a Glioblastoma Multiforme (GBM), grade 4, the most aggressive brain tumour.

Ieu was convinced he would beat it, he invested a lot of time in researching GBM and although the general prognosis was 12 to 14 months, he also found cases of people living for ten years or more.  He remained positive and upbeat – as he had always been – and shared regular updates on social media so our friends and family could see how well he was doing.

Ieu underwent chemotherapy and radiotherapy simultaneously for a period of 6 weeks, 5 days a week, which carried on until July.  During this time, we reassessed our lives, decided that enough was enough and moving back to Wales was our best option.  We had Sienna to think about, and we felt that being back amongst our family would be the best thing for all of us.

We flew from Dubai back to the UK on 4th August.  As we settled into our new home, Ieu said he didn’t feel very well and went to bed early.  The next day he had a raging fever and was diagnosed with pneumonia.  He was taken to Bangor Hospital for treatment, and stayed there for a week.

Ieu was then referred to a new neurooncologist in North Wales.  Friends and family thought we were mad, swapping private healthcare in Dubai for the NHS, but the level of care back home was amazing. In Dubai, it’s much more transactional and there is little support once you’ve been treated, so we found that the care and attention from the NHS staff to be just what he needed.

He began another protocol of chemotherapy and continued on that until there was no more they could do.  He had an MRI scan in December 2015 and they found that the GBM tumour was now slightly bigger.  He asked them how long he had got left, and they said it was probably only six months.  We thought that seemed like lots of time, and secretly hoped they were being pessimistic and he had longer.

That Christmas, I bought Ieu a star from Sienna.  We named it “Daddy’s Star” and we told Sienna that when he was no longer around, she could look up in the sky and the brightest star would be the one he was sitting on.

Unfortunately, the tumour continued to affect his health adversely, and he deteriorated pretty quickly.  He had a few falls and the continued use of steroids had affected his bone density, so his spine was beginning to crumble.  Fortunately, I had continued to run my business from our new home in Wales, so that meant I was at home to look after him.

We both knew Ieu’s condition was getting worse, so in April 2016 we decided to renew our wedding vows, back in the same hotel in Dorking.  By this time, he was now in a wheelchair, but we didn’t care.  It meant so much to us to have that day and get all our friends and family together again.  It was Ieu’s way of getting everyone together again, possibly for the last time.  Sienna was a bridesmaid and loved every moment of being in a beautiful dress.

Within three weeks of our marriage renewal, he could no longer sit upright and became bed-bound.  He also became very confused and forgetful, he had always been very military style with his medication, but now struggled to remember if he’d taken it or not.  He also found his motor skills failing, with something like a text message impossible for him to type out.

Ieu was due to have another MRI scan at the beginning of May, but by then I couldn’t get him there.  He was completely bed-bound, and now had a bed downstairs in the house.  An ambulance came to take him to hospital, but in the end, we needed the help of paramedics to get him there.

The scan delivered devastating news.  The GBM had almost doubled in size since December, and was now encroaching on the right side of his brain.  This was the reason that his speech and memory were getting so bad.  They delivered the prognosis of two to six weeks, and our world crumbled.

Due to Ieu being bed-bound, I had to make the sad decision to have him moved to a hospice in Llandudno on 20th May.  I was no longer able to care for him at home on top of looking after Sienna, who by now was two three years old.  She knew that Daddy was poorly, we’d told her all along that he had a ball in his brain that was making him ill.  The day before Ieu passed away Sienna visited him at the hospice.  It was the first time Ieu smiled that day when he heard her voice.  I remember her kissing him on the head and helping him drink from a beaker.  It was as beautiful as it was heart-breaking to watch. 

Over that weekend, Ieu seemed ok.  He was relatively joyful when friends visited him. He struggled to speak, and his confusion meant that answering questions from the doctors was difficult.  By Monday, he had a raised temperature, and by Tuesday he had pneumonia again.  The hospice advised us that he could only have intravenous antibiotics in hospital, but his fear of dying in hospital meant that he opted for oral antibiotics instead.  He was also being given morphine and medication for anxiety, but it was difficult for them to administer because his swallow reflex was now failing.

Ieu drifted in and out of consciousness, and that night I stayed with him.  I had resigned myself to him not recovering and this probably being the end, so I wanted to be there with him.  That night I listened to his breathing and it was a horrible sound, like he was drowning.

On Wednesday 25th May, the nurses came in to see him at 6am but he was unable to communicate with them.  His mum and sister arrived, and at 9am we were moved into the family room while the nurses administered his medication.  They left his room and told the three of us we could go back in.  In those precious few seconds between the nurses leaving and us arriving, Ieu slipped away.  I believe that he died at that point because he was trying to protect me from witnessing it.  With my first aid training, my first instinct was to try and give him CPR, but I knew that he had asked not to be resuscitated.

We held his funeral on 10th June, and 150 came, including some who flew in from Dubai.  Ieu was so loved, and in accordance with his wishes, I organised for a cardboard coffin in the colours of the Welsh flag, with the Millennium Stadium on top.  We had his wake in his favourite pub in Caernarfon, and for that part of the funeral Sienna was there.  I didn’t want her to have bad memories, but at the wake we were celebrating his life, so it seemed fitting she should be there.

Sienna and I talk about Ieu all the time.  She likes to send helium balloons up to Daddy’s Star, and by now he must have about a hundred of them!  We look for his star in the sky, and she has coped amazingly well.  I’ve had advice from child bereavement counsellors, and they tell me that children are resilient and brave, and Sienna certainly is.  She is just like her Dad, he just got on with his illness, and she just gets on with him no longer being here.

Until Ieu was diagnosed, I had no idea of the shocking statistics for brain tumours.  Not only are they the biggest cancer killer of children and adults under 40, but the money that goes into researching a cure is woefully low.  It is wrong that only 1% of the national spend on cancer research has been allocated to this devastating disease, because Ieu was just 43 when he died, and he should have had his whole life ahead of him, with his family.

Ieu’s friend Johnathan is running the London Marathon this year to help raise funds for research, and I want to share Ieu’s story to help him, and to raise as much awareness as I can.  If he’d had a different cancer, he might be here now.  Research into brain tumours is not just necessary, it’s vital.

Kelly Jones
January 2017

Ieuan Jones

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