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We often feature our wonderful CHECT mums in our stories, and we feel it’s important to recognise those amazing dads out there who go above and beyond to support their families as well.

For Father’s Day, we asked children (with a bit of help from mum) to nominate their dads for an honorary CHECT Champion Award. Congratulations to the awesome dads below who were nominated, each of you will receive a special CHECT Champion certificate!

Champion Dad: Charl Koekemoer
Nominated by: Taigh Koekemoer (age 20 months)
written by Charlene Koekemoer (mum)

I [Taigh] would like to nominate my hero Dad for the Honorary CHECT Champion Award.

I was diagnosed with Rb at nine weeks old and had my right eye removed a week later (five days before Christmas). We had to travel from Ireland to Birmingham to have the operation and then fly over every month thereafter for check-ups. My mommy was very upset and really struggled with what was going on with me.

When I was in hospital for three days in another country, daddy sat with me in the hospital feeding me, loving me and playing with me so that mommy could have a break and go shower and sleep at the hotel for a few hours. We even met Batman together.

My daddy comes with me to every check-up appointment, every oncology appointment and every ocularist appointment… and I have had A LOT of appointments. When I have my appointments my daddy helps distract me so that I am not scared while the doctors are doing their checks.

I know my daddy can be scared sometimes too, but without my daddy’s strength and help, mommy and I wouldn’t have come out as strong as we are after my Rb diagnosis.

Champion Dad: Tom Roselle
Nominated by: Bea Roselle age 19 months
written by Susie Roselle (mum)

My daughter Bea and I would love to nominate daddy Tom.

Tom was diagnosed with retinoblastoma when he was only little. Unfortunately, along with chemotherapy treament, he had to have his right eye removed. Bea thinks her daddy is her hero because she has to have her eyes checked regularly and often under general anaesthetic to ensure she doesn’t have any signs of the same cancer.

Her daddy is always there for her when she goes to sleep and when she wakes up. Bea’s toy mouse ‘Pipsqueak’ also joins Bea in the operating theatre and gets dressed up for the occasion!

Along with being a full-time stay-at-home dad and running his own business, Tom is always trying to help others and is almost at the end of a five-year degree to become a chiropractor.

Champion Dad: Phil Booth
Nominated by: Monty (age three) and Harry (age eight)
written by Clare Booth (mum)

On behalf of Monty and Harry we would love you to consider their daddy for this award.

Our beautiful boy Monty was diagnosed with retinoblastoma on 28th September 2018 at the age of two years and four months, unfortunately Monty had to have his eye removed six days later. To say it was a huge shock is an understatement – we had never heard of Rb.

My husband Phil has been my absolute rock we don’t know what we would do without him. The whole family have found Monty’s diagnosis devastating, particularly as Phil lost his nan just a few months before Monty’s diagnosis.

We feel very lucky that Monty is now cancer free. Monty has been, in Phil’s words, his “hero”. He is the bravest person we know – nothing has stopped him and he is doing so well. His big brother Harry (aged eight) is amazing too – he is so protective of his little brother.

As a family we are now putting all our efforts into fundraising. Phil is doing ten 10km runs. In just a couple of weeks he has completed his first two runs and he is also arranging a golf fundraiser with his dad. He desperately wants to show his appreciation for all the hard work CHECT and Birmingham Children’s hospital do.

Champion Dad: Chris Nash
Nominated by: Olivia Nash age 3
written by Stefania Nash (mum)

My name is Olivia Nash and I am three years old. I would like to nominate my daddy for this award because he has been a rock to me, my new baby brother and to my mummy – including when my baby brother was growing bigger and bigger in mummy’s tummy.

He has been there when I needed him the most from having my diagnosis, eye removal, chemotherapy, proton beam therapy in Germany and my sleepovers with him at our local hospital. He has taken time off work to care for me alongside mummy.

Whenever i felt scared, daddy made it all okay. He showed me that it isn’t so scary and made me feel at ease and showed me i can be brave through this journey. I love my daddy and he is my best friend. He is our champion.

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Our March members’ day took place at the Brooklands Museum in Weybridge, Surrey – the birthplace of British motorsport, aviation and home of Concorde!

Members’ days are a great way to meet other families affected by retinoblastoma and to nominate your child for a CHECT Champion Award.

Here is a collection of photos taken on the day.

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“I Joined Childhood Eye Cancer Trust (CHECT) for Retinoblastoma Awareness Week 2019 where I met remarkable parents with remarkable children!” Peter Dowd MP

CHECT Information and Research Manager Petra Maxwell recalls our Parliamentary Drop-In Session held during May for Retinoblastoma Awareness Week 2019.

It was with a mixture of excitement and some trepidation that Patrick and I approached Portcullis House in Westminster on the morning of Wednesday 15th May. We were there to host a Parliamentary Drop-In event, as part of World Retinoblastoma Awareness Week 2019, to engage MPs in raising awareness of Rb in their constituencies.

It was the first time CHECT had ever held an event like this. Back in December we were approached by member Hannah Matin, who works in the office of Paul Farrelly MP, to suggest we hold such an event. In her role Hannah was able to secure us a room at the centre of Westminster, and to advise us on the best way to run such an event.

So the room was booked, invitations sent out, but would anyone come?!

We shouldn’t have worried. As you know, over Easter we asked CHECT members to write to your MPs on our behalf, to share your experiences of Rb and to encourage them to attend the event.

We are so grateful to all of you who took the time to do this – it really paid off. Almost 40 MPs attended, including the Parliamentary Under Secretary of Health (Seema Kennedy), the Shadow Minister of Health (Sharon Hodgson), and the Shadow Minister for Disabled People (Marsha de Cordova). We also welcomed Jacob Rees Mogg to the event, much to the delight of teen CHECT member Christopher Payne who is a huge fan!

The four-hour event was an opportunity for MPs to meet some of our members face to face, and to hear about their experiences of Rb. So a huge thank you to everyone who gave up their time to come along and give their support:

• Hannah Matin
• Pippa, Glenn Branch and daughter Amber (age 2)
• Angharad Price
• Vicky Payne and son Christopher (age 14)
• Pippa Burrell and son Sebastian (age 3)
• Gemma Boggs (trustee)
• Alex Brebbia (trustee)
• Robert Downes (trustee)
• Amanda Moore (trustee)

In addition to chatting with CHECT members, MPs were encouraged to have their photo taken with our interactive #HaveYouCHECT banner to share on social media with suggested awareness messaging. Over a third of those who attended have done so, including Mr Mogg with his 277K Twitter followers!

We also talked to MPs about the importance of sharing information on signs and symptoms and referrals with key healthcare professionals in their constituencies, in particular GPs, health visitors and opticians. We have been in touch with everyone (both those who attended and those who were unable to attend) since the event, and a number have already confirmed they have disseminated our professional information accordingly.

And it doesn’t stop there. One MP has been in touch about issuing a press release, another has pledged to write about Rb in her column in a local paper, and another MP has offered to set up a meeting between CHECT and key health influencers in her local area.

Once again, thank you so much to all the wonderful CHECT members, without whom none of this would have happened: from Hannah’s original idea, to everyone who contacted their local MPs, to those who came along to support us. We will keep you posted on the outcomes!

Our thanks to Paul Farrelly MP and Jeremy Lefroy MP who sponsored the event on behalf of CHECT.

List of attendees (in no particular order):

Paul Farrelly (Newcastle-Under-Lyme)
Seema Kennedy (Parliamentary Under Secretary of State for Health)
Jack Brereton (Stoke on Trent)
Dr David Drew (Stroud)
Alison Thewliss (Glasgow Central)
Rafael Kochaj (Office of Bill Wiggin MP, North Herefordshire)
Stephen Lloyd (Eastbourne)
Stephen Pound (Ealing North)
Sharon Hodgson (Shadow Minister for Public Health, Washington and Sunderland West)
Eleanor Smith (Wolverhampton South West)
Peter Dowd (Bootle)
Jacob Rees Mogg (North East Somerset)
Paula Sheriff (Dewsbury)
Barry Gardiner (Brent North)
Wera Hobhouse (Bath)
Sir David Amess (Southend West)
Sir Christopher Chope (Christchurch)
Nic Dakin (Scunthorpe)
Mark Tami (Alyn and Deeside)
Marcus Jones (Nuneaton)
Mims Davies (Eastleigh) – assistant Jed stayed long time
Sir Desmond Swayne (New Forest West)
Preet Gill MP (Birmingham Edgebaston)
Heather Wheeler (South Derbyshire)
Damien Moore (Southport)
Mark Pritchard (The Wrekin)
Jo Stevens (Cardiff Central) couldn’t attend but sent her assistant who promised to help sending details to her constituency staff to pass on to HCPs in their area
Mary Glindon (North Tyneside)
Andrew Gwynne (Denton & Reddish)
Mike Penning (Hemel Hempstead) – took families into Parliament
Chris Grayling (Epsom & Ewell)
Stuart McDonald (Cumbernauld, Kilsyth and Kirkintilloch East)
Rupa Huq (Ealing Central and Acton)
Mel Stride (Central Devon) – couldn’t attend but assistant Mike Knuckey came instead
Anna McMorrin (Cardiff North)
Marsha de Cordova (Shadow Minister for Disabled People)
John Baron (Basildon and Billericay)

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“I expected the doctor to say that I was another worried over-bearing mother, panicking over nothing” – the words of a mother who found out the devastating news that her baby boy had cancer.

Eight-month-old Husayn was standing and leaping over the sofa arm in the living room one afternoon when his mother Parveen noticed a strange glow in one of his eyes.
Parveen Rizwan from Birmingham said: “At first I thought nothing of it. I thought it was a combination of the sun shining in through the window and the glow from the TV. It was only when my husband also mentioned seeing something in his eye a couple of days later that we knew something could be wrong.”

Her husband Rizwan Googled the symptoms and retinoblastoma, a rare childhood eye cancer which affects just one child in the UK per week, came up as a possibility.
Parveen said: “To be honest, even at that point, we really thought it wouldn’t turn out to be anything serious. However, for peace of mind, we thought we would mention it at the GP appointment we had coming up in a couple of weeks.”

Husayn’s eyes were examined by their GP, who stated that she needed to make an urgent referral, knowing that the symptoms could indicate retinoblastoma.

The following day at the Birmingham Midland Eye Centre, a specialist confirmed that Husayn had very little, if any, vision in his right eye.

Parveen said: “We were obviously shocked – we had no reason to suspect that he had any problems with his vision – he seemed like a normal baby, playing and doing normal baby things. He never missed a thing, picked everything he wanted and held anything given to him. Even his pincer grips were spot on. Little did we know that he’d already adapted to life with vision in just one eye.”

Husayn was seen at Birmingham Children’s Hospital two days later for further intensive tests under general anaesthetic. It was there that they confirmed Husayn’s devastating cancer diagnosis in both of his eyes, leaving him with just 10% vision in his most affected eye.

Parveen said: “I just broke down. Holding on to my husband so tightly, who was trying so hard to be strong for both of us, we listened as the diagnosis of retinoblastoma was relayed to us.

“Tears rolled down my cheeks. It seemed so surreal. How could this be true? When you can’t see something physically wrong, and they seem fine in themselves, you can’t accept that your little baby is sick. ‘When?’, ‘How?’, ‘Why?’ were just some of the questions which flooded my mind at the time, but ‘Will my child be ok?’ was the only question which needed to be answered.

“Although Rizwan had been so strong up until now, he broke down when he saw Husayn in the recovery room, still groggy from the anaesthetic. I never have seen my husband cry since his mother died three years ago. This broke our hearts immensely. I still can’t come to terms with it. Even now, it doesn’t feel real.”

Thankfully, there was a chance that both of Husayn’s eyes could still be saved. His left eye had laser treatment straight away. However, an intensive course of chemo of was required to shrink the tumours in his right eye.

Thanks to a combination of patching to improve the sight in his weaker eye and a good response to chemo, Parveen says that Husayn’s sight in his poorly eye has vastly improved – amazingly by 70% a few months ago and he now has equal vision in both eyes.

Having finished his chemo, now 20 month old Husayn has ongoing laser treatment every three-four weeks.

“He’s on the edge of the cancer now. Throughout everything he’s been our strong little fighter – he still comes up fighting and definitely shows us he is boss. I’m absolutely over the moon. For the success of treatment and the care provided by all the staff involved in Husyan’s treatment and aftercare at Birmingham Children’s Hospital. They are tremendous. We can’t thank them enough. Absolutely wonderful team – thank you so much.”

Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust, said: “Retinoblastoma is rare, with around 50 cases diagnosed in the UK each year. In addition to this, the symptoms are very subtle and children often seem well in themselves which makes it hard to diagnose.

“Currently half of babies and children diagnosed lose an eye to save their life. Urgent referral and early diagnosis can help save a child’s sight, eyes and life.

“12-18 May is World Retinoblastoma Awareness Week and we are urging all parents to be aware of the symptoms and to have their child checked out if they have any concerns at all – the most common signs are a white glow in the eye which visible in certain lighting or a flash photo, or a squint (lazy eye).”

NOTES TO EDITORS

1. The Childhood Eye Cancer Trust (CHECT) is a UK charity dedicated to helping people affected by retinoblastoma. It:
• Provides ongoing support and information to families and individuals.
• Funds research into the prevention and treatment of retinoblastoma.
• Raises awareness among health professionals and the public.
• Influences policy to improve services for patients.

2. Retinoblastoma is a rare and aggressive form of eye cancer that affects babies and young children, mainly under the age of six. On average, around round 40-50 cases are diagnosed a year in the UK – or one child a week. It represents 3% of all childhood cancers and 10% of cancers in babies under the age of one in the UK.

3. Around 98% of children survive retinoblastoma in the UK but early diagnosis is crucial in order to save a child’s eyes, sight and life. The most common symptoms are a white glow in a child’s eye or pupil in dim lighting or when a photo is taken using a flash, and a squint.

4. CHECT has been a registered charity since 1987 and was formerly known as the Retinoblastoma Society.

5. For more information on CHECT or retinoblastoma (also known as Rb), including signs and symptoms, diagnosis, the red reflex test and treatment options, visit www.chect.org.uk.

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Cambridge student Dominic Bielby shares his story on how having an artificial eye has not held him back. Instead, he found that embracing his uniqueness can be used to his advantage when making new friends.

My very first memory is sitting up in a hospital bed, watching the trolleys and patients scurry past me in a paediatric ward. After a while my own bed is wheeled away into a room nearby, a clinical green glow awash on the walls as a breathing mask is placed over my face. With the taste of anaesthetic I can still sense today I drift to sleep. It was just one of the many check-ups and follow-ons I received after I had my left eye removed, back when I was just two, in order to treat my retinoblastoma.

Back then I had absolutely no idea what was in store for me in the future. Now, thanks to some hard work and a bit of luck, I’m studying Law as an undergraduate at the University of Cambridge. For me, it’s a dream come true and being an Rb survivor never held me back.

I’ve never seen my artificial eye as a disability (and even if I could, I wouldn’t be able to see it all!) but rather as something unique about my person. One of the main fears that comes with having an artificial eye is social interaction, that feeling that somehow you won’t fit in because your eye contact is slightly off or your face is not quite symmetrical. That idea can take root, especially when having an artificial eye is relatively rare means there’s no-one to tell you what it’s been like for them. When it comes to a major change like heading to university for the first time that fear can seem even more pronounced.

In my experience, all through school and now, at the start of university, having an artificial eye has never been an obstacle to making friends and being social – in fact I’ve found it advantageous more than anything. I can guarantee that nothing spices up the blandness of yet another, ‘What’s your name, where are you from and give us an interesting fact about yourself!” than casually dropping in the fact that you have an artificial eye. As an icebreaker, it’s unmatched.

But whimsicality aside, in all my time as a student, even in the daunting setting of starting as a fresher at university, not once have I been met with anything other than interest and intriguing questions when my artificial eye or my Rb has been brought up. It has never been anything other than a point of interest and has never stopped me from making friends and going out.

It is quite odd when your best friend takes a pause and all of a sudden comes out with, “You know, I forgot you have a fake eye!”. In some ways I forget myself sometimes because, at the end of the day, your social life and your friendships aren’t defined by your Rb or your artificial eye – what matters is your own personality. Having an artificial eye doesn’t make you uninteresting or unwanted, in fact, I’ve found it to be my own special way to connect with new people and make new friends. When life gives you lemons, you make lemonade, and having an artificial eye is a great way to spark a chat with someone – before you know it, you’re friends.

From an academic perspective, having an artificial eye hasn’t prevented me getting my grades or passing my exams. Of course there’s no reason for it to, but with all the other pressures of teenage life and anxieties which come from having an artificial eye, it may feel like reaching your full academic potential is impossible.

In spite of having been diagnosed with Rb seventeen years ago, and in spite of my artificial eye and all the pressures and hardships and problems that came with that – for myself and my family – I was able to get myself a place at one of the best universities in the country. If I can do that as a survivor of Rb and with my artificial eye, there’s nothing to stop the same from holding anyone else back.

UPDATE: Celebrating his uniqueness one step further – and to mark the end of his freshman year – Dominic has recently received an artificial eye painted to reflect his Corpus Christi College crest.
Dominic set up a Go Fund Me page to raise money for the prosthetic eye – which he has personally matched and donated to CHECT. He’s promised donors that he would wear it to college events, tours and maybe even interviews too!

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This short programme, presented by Shane Richie, gives a brilliant insight into the journeys of some of our families affected by retinoblastoma, the work that we do and why supporting Childhood Eye Cancer Trust is incredibly important.

Thank you so much to Shane Richie for giving up his time to do a fantastic job of presenting our appeal, and also to the families, teenagers and little ones who all took part. A huge thank you to everyone who watched and donated.

Originally aired on Sunday 24th March 2019 on BBC1.

BBC Lifeline Appeal - Childhood Eye Cancer Trust - YouTube
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Dear supporter,

This World Retinoblastoma Awareness Week 2019 (12th-18th May), the Childhood Eye Cancer Trust is holding a drop-in event at Westminster on Wednesday 15th May.

We are inviting MPs to come along to meet parents of children and adults affected by Rb, to hear about their journeys to diagnosis and the longer term impact of the condition. We will also be asking them to complete two easy actions to help raise awareness of the signs and symptoms of retinoblastoma with parents and healthcare professionals in their constituencies.

We need your help!

We have invited all UK MPs to our event, but we know it will be so much more effective if their own constituency members ask them to attend. We have therefore drafted a template letter which you can personalise and send to your MP.

If you are a parent, you could even ask your child to draw an invitation to go with your letter to make it stand out even more!

Not sure who your MP is? Find out here!

This is the first time that CHECT has held an event like this, and we want to be able to speak to as many MPs as possible, so we would be really grateful if you could take a few minutes to help us in this way.

Best wishes,

Petra Maxwell
Information & Research Manager
petra.maxwell@chect.org.uk / 020 7377 5578

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Being diagnosed with retinoblastoma back in 1950, Greg Ovens recalls his life experiences including fond memories of his ‘days out’ at Moorfields Eye Hospital with his father.

As I approach my 70th Birthday, I have been reflecting on the highs, lows, ups, downs and the many great and magical times l have had in my life so far.

Greg at age eight.

My journey started back in 1950, when at 10 months old it was found that I had a retinoblastoma. The eye cancer was not unknown of at that time, but treatment was in its infancy and immediate eye removal was the only option to stop the spread of the cancer.

My family had no history of the disease and my parents were very shocked at the diagnosis given to them following an initial appointment at Moorfields Eye Hospital in London. It was first suspected after my mother had noticed a strange reflection in my left eye while she was drying me off during bath time.

What quickly followed was a long and drawn-out stay at Moorfields Eye Hospital with an operation to remove my eye, as well as a post-operative treatment which continued for many months. Apparently at one point I actually thought that my Connie, my favourite nurse, was my Mum!

As time moved on, I continued to visit Moorfields every month for check-ups with my father, sometimes accompanied by one of my brothers or sisters. Dad made the visits a day out for me, we would take the bus from Fulham (West London) to the City, and have tea and a pastry at the hospital canteen. We would sit on the long wooden seats in the waiting area, gradually sliding along until it was my turn to be called.

The surgeons sat perched on tall stools behind tall desks at the front of the room. They examined you from above, looking down from what seemed like a great height – I thought these men were giants! After each examination, we would go to see the hospital’s Lady Almoner (similar to a social worker). She would organise my next appointment and also arranged our visits to the artificial eye consultants.

As I grew, my glass eyes were changed regularly – and as a small, active boy – replacements due to loss or breakages were pretty common as well! These artificial eye clinics were in a Victorian building near to the hospital – a strange place with thousands of glass eyes in cabinets all around the room. Seeing them like that – it seemed very creepy as I recall! After that, Dad and I would make the trip home – a long walk, a bus ride and long walk at the other end.

Looking back, I now realise the incredible effort my father had to go through. The trips took most of the day, and happened straight after my father had finished a night shift – he was a stoker in the boiler house at Fulham Gas Works. Then once we got back home he had to get ready for another night shift – all with little or no sleep.

My appointments at Moorfields continued regularly until that amazing day, when at the age of 21, I was told I didn’t have to come back and was finally discharged. That day is forever etched in my memory!

Greg today

I can only say that the loss of an eye has never had a negative impact on my life. There is nothing I have not been able to do (except play the piano!). I have played many sports, some well, some badly, but have never felt that my prosthetic eye has stopped me from doing or achieving anything. My career has been interesting, varied and has given me many opportunities to travel and work abroad. Since retiring eight years ago, my wife and I have continued to travel extensively.

I would like to take this opportunity to thank the doctors and staff at Moorfields who saved my sight and my life, the Childhood Eye Cancer Trust who continue to do such important work, my family and friends and all the other people along the way who have given me their love and support.

Thank you all.

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A moving and inspirational TED Talk from James Morley-Smith, one of our CHECT supporters, whose son lost his sight after being diagnosed with retinoblastoma.

You can watch the full video below:

Taken from the TED website: After his son lost his sight, design technologist James Morley-Smith observed how he adapted to interact with the world around him, such as learning to play piano, black keys first. This tactic — factoring in immutable limitations — inspired Morley-Smith to approach his design from a new angle by considering impediments first. “It doesn’t matter what is impairing you from reaching your goals,” he says. “Reframe them, and they might just be the advantage you need.”

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A mother of identical twins was shocked to learn that a strange ‘glow’ in one of her daughter’s eyes was actually retinoblastoma. 

Identical twins Indiana (left) and Aurelia (right).

Identical twin Indiana was diagnosed with retinoblastoma (Rb) when she was just under four months old.

After a visit to a health visitor, everything was believed to be fine with the twin girls. However, when Indiana was sitting on the sofa one day, mum Alison noticed the dim light reflecting oddly in her little girl’s eye.

Alison, from South Croydon said: “Her eye looked like a cat’s eye or a marble – but only in a certain light. I first noticed it when she was sitting near the TV, but we later went shopping in H&M and I saw it again. I thought it was odd so got it checked out by a GP. Looking back, I also remembered seeing something online about a ‘white eye’ being linked to cancer.”

Alison added: “I feel terrible now – but before she was diagnosed, my husband and I were joking that Indiana looked a bit cross-eyed, which we did check with the health visitor and were reassured all was fine.”

Another sign of Rb is a squint – where the eyes point in different directions.

Worried, Alison and her husband Jerome took Indiana to her GP. A junior doctor examined Indiana’s eyes by conducting a red reflex test, which was then replicated by a GP. A referral was made to Moorfields Eye Hospital in London.

With the results playing on her mind, Alison then called the hospital to make sure they had received the referral – they hadn’t. Moorfields advised that Indiana could be seen in their children’s A&E department straight away. It was there that they did an ultrasound and confirmed Alison and husband Jerome’s dreaded suspicions – Indiana had cancer.

Alison said: “On top of the stress of being a new mother and learning to cope with twins – to hear the news that one of them has cancer, is absolutely terrifying. You never think it will happen to you – it’s always someone else’s child you hear about – never yours.”

Indiana later began chemotherapy treatment at Great Ormond Street Hospital.

Alison said: “I urge all parents to look out for the signs of Rb – which can include a squint or a white glow in the eye – and keep pushing their doctor if they feel something is not right. Despite being a rare disease, I also feel really lucky that it was caught early enough.”

Indiana had non-heritable unilateral Rb, but her identical twin sister Aurelia is also currently being monitored for signs of Rb as a precaution.

Much to everyone’s relief, Indiana’s cancer has responded well to chemotherapy, her tumour has shrunk and her check-ups are getting further and further apart.

Alison added: “We’re now spending periods of time covering her good eye with an eye patch to try and improve the vision in her other eye – however she’s now sneakily discovered how to remove it! Indiana is certainly the rowdier of the two – I can imagine she’ll be the one getting her sister into trouble when they’re older!”

Retinoblastoma is a fast-growing cancer that affects young children, mainly under the age of six, and early diagnosis is essential in order to save a child’s eyes, sight and life. Sadly, more than half of children will have an eye removed to stop the cancer spreading.

Today, to mark Rare Disease Day (28th February) the Childhood Eye Cancer Trust (CHECT) is urging parents and healthcare professionals to be aware of the symptoms and spread the message that ‘just because it’s rare, doesn’t mean it isn’t there’.

Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust, said: “Retinoblastoma is rare, with around 50 cases diagnosed in the UK each year, so many doctors will never come across it in their career. In addition to this, the symptoms can be quite subtle and children often seem well in themselves which makes it hard to diagnose. Unfortunately this can lead to alarming delays and we know that early diagnosis can potentially offer more treatment options and a better outcome for the child.”

The CHECT’s Pathway to Diagnosis Information* shows that the two main symptoms of retinoblastoma parents have reported are a white glow in a child’s eye, seen in dim lighting or when a photo is taken using a flash and a squint, where the eyes do not look in the same direction. Healthcare professionals should carry out a red reflex test on any child showing these symptoms in order to rule out cancer. This is a simple, non-invasive test which is done using a medical torch in a darkened room to check the retina at the back of both eyes. If eye cancer is suspected, an urgent referral should be made (within two weeks), according to the NICE guidelines.

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