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Diagnosed with retinoblastoma (Rb) at 14 months old, Alex tells us about the “roller coaster ride” that is his life, but ultimately how losing your sight is not the end of life’s wonderful experiences.

Having been diagnosed with Rb as a baby, it’s impossible to say if I remember ever having “normal” sight, but there are certainly a few times in my life where I’ve woken up and felt like someone had stolen my eyes and replaced them with some even dodgier than mine.

Alex at 14 months displaying a common sign of Rb – a white ‘glow’ in the eye.

My parents were told that I had bilateral retinoblastoma and that I’d need to undergo a cycle of radiotherapy* to treat my right eye and hopefully save the left. Eventually, my right eye was removed leaving me with pretty good sight in the left eye. My remaining sight allowed me to do pretty much everything my friends did at that age, and the only real impact I remember was having larger print books at school and terrible handwriting. 

Later on, I had to have two doses of chemotherapy and laser treatment. I can’t say that I really remember noticing a change in my vision after the treatment, and in all honesty, I remember just putting the experience behind me and getting on with life. We’d been warned that all of the treatment I’d had “may” cause some issues further down the line such as a detached retina, a cataract, and possibly some bleeding or slight loss of vision.

And wasn’t that the truth!

A series of unfortunate events

Not being a fan of doing things by halves, later on in life, I got a small tear in my retina and had it repaired, developed a cataract which then worsened, then I went and chronically detached my retina and also had some internal bleeding in the eye. After the removal of the lens in my eye to get rid of the cataract and insertion of silicon oil to repair the retina, the effects on my sight were substantial.

When I woke up, I was truly scared of what I could see – or more accurately, couldn’t see. Doctors were telling me they were really pleased with the outcome, and I remember thinking “is this some kind of joke”? Looking back, I now know how incredibly lucky I was as the alternative was a complete loss of vision, something I’d not allowed myself to even contemplate.

I spent my young adulthood pretty much blagging my way through life. I’ve been very fortunate that I’ve had close friends throughout that have supported me to live my teenage and early 20’s the same way they have. I really don’t know how I did some of the stuff I did, like clubbing holidays, quad biking in the desert in Egypt and the usual teenage stuff (that I won’t mention!), but I feel so fortunate and grateful to have done so.

What happened to me next is incredibly rare for someone who had Rb as a child. In my mid-twenties, my life turned upside down literally in the blink of an eye. I woke up and noticed straight away I had a black shadow in the top corner of my vision, I tried blinking and wiping the sleep out of my eyes hoping it’d just disappear, but unfortunately it was here to stay. Then followed countless trips to hospitals, injections behind the eye, injections into the eye – but in a nutshell, I ended up losing all of my remaining sight, watching it deteriorate day by day. 

New opportunities and experiences 

Alex and his guide dog River.

2016 was the biggest rollercoaster ride of my life so far, but not just because of the negatives. By the time 2017 rolled around, I’d learned to get around independently using a mobility cane and got a new job. Janey and I bought our first home together – and to top it off –  my beautiful girlfriend is now my fiancé and we’re to be married in May of this year!

Three years down the line, I’ve experienced so much that I don’t think I would have if my sight remained. I enjoy my work now and have progressed in my career, whereas before I just spent my days struggling through shifts. I’ve met some amazing people and formed great friendships and have been blessed with my handsome guide dog River – who will be starring in a TV advert with me in March. I’ve cycled 46 miles on a tandem bike and put myself through a 15km obstacle course for charity – and so much more!

It would be a lie to say that I don’t care that I’ve lost my sight, but I truly believe that my experience has shaped me as a person and taught me a lot about what’s important in life. I realised how unbelievably fortunate I am to have such a supportive network of family and friends. How lucky I am to have found a life partner that truly has my back no matter what and loves me for who I am.

To anyone who may be going through what I experienced I’d say, value the help and support you have available to you, or you will be the one disabling yourself. Take advantage of all the opportunities life throws at you no matter how daunting they may be, and learn to appreciate the stuff that doesn’t involve sight – you may not recognise it yet, but it’s there!

The next adventure

Alex and Janey are looking forward to their wedding day and starting a family together.

And now on to the next chapter… Janey and I would like to have children together, and because I unfortunately have the Rb1 gene, we will be going through pre-implementation genetic diagnosis (PGD) treatment.

Of course, this is not the only option for us if we want to have children, but after a lot of detailed explanation and thoughts about our options, we have decided PGD is right for us. Dr Elisabeth Rosser (Great Ormond Street Hospital) has been extremely helpful and supportive through the experience so far, and we can’t wait until the day when we can go back to her office holding our baby to express our deep thanks to her.

Perhaps next time I write a post it’ll be talking about life as a dad, and how jealous River is of the little one stealing the attention!

*This type of radiotherapy that Alex had is no longer used to treat Rb.

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75 years on, Alan shares his journey of retinoblastoma treatment in a pre-NHS system, growing up with a prosthetic eye and living life to the full.

I was born in Glasgow during Christmas 1942 and was diagnosed with retinoblastoma (Rb) at the age of two, resulting in the removal of my left eye. At an early age, all my parents told me was “there was a growth in your eye which would have killed you had it not been removed”.

It may be hard to believe, but throughout their long lives (my mother lived to over 100 years old) the subject was never discussed further. I have no idea how my parents felt at the time of the diagnosis and, being pre-NHS, how the operation was paid for. Also, back then there weren’t organisations such as CHECT to provide support and advice to families.

Although my parents must have been concerned that I might damage my right eye, the approach they took was not to wrap me in cotton wool – instead, they encouraged me to enjoy life to the full. Luckily I had excellent vision in my right eye.

When I turned five, my family moved to Leeds. On our housing estate, there were plenty of young children. We would spend our spare time playing cricket and football in the street or going to the nearby woods to climb trees and use willowherb stalks as swords. Only occasionally an inquisitive young child would ask if there was something not right with my left eye, or it was made of glass – conversations quickly moved on and I did not experience any teasing. At secondary school, I enjoyed participating in all sports and represented the school in football, tennis and athletics.

I joined the Cubs at the age of eight – this was to be the start of my 20-year involvement with the Scout movement in which I eventually became a Scout Leader. It established my love of the outdoors including camping, fell walking and racing. It was through the Scouts I formed lifelong friendships, it also proved to be a real confidence building experience.

After graduating from university, I started work in Scotland at a large chemical factory owned by an international oil company. I spent my whole career with the same company and was fortunate to have the opportunity of holding senior positions in London, Geneva, Paris and finally back in Yorkshire.

My greatest good fortune was to marry my wife Jenny – later this year we will celebrate our Golden Wedding Anniversary. My Rb would appear to be non-inheritable, there’s no history of the illness in the family and our two children and five grandchildren have been Rb free.

I cannot remember how many artificial eyes I have had during my lifetime. During my working career, I had two which each lasted about 12 years. Others lasted only about six years when the black of the pupil “silvered”. My main concern always was to get a good match with my green/grey right eye and for the artificial eye to be secure in its socket. Very rarely did the eye “pop out” unexpectedly. About five years ago I underwent an operation to deepen my socket sill and that, plus having a lighter weight prosthetic eye, has enabled me to still meet the challenge of football with my grandsons and to keep charging about on tennis courts.

I appreciate that those who have had Rb will have had various experiences and that in virtually every aspect of my life I have been very lucky. Looking back I increasingly appreciate the approach taken by my parents. Neither they nor I would wish that having one eye should define who I am.

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As the year draws to an end, it’s a time when we like to look back and reflect on what we’ve achieved, thanks to your absolutely amazing support.

So here are just a few of our many highlights of the year, that have all been made possible because of you. Thank you.

Wishing you and your families a very Merry Christmas and a Happy New Year, from all of us here at the Childhood Eye Cancer Trust.

Global’s Make Some Noise

We received an incredible grant of £93,000, awarded over two years, by Global’s Make Some Noise after we were chosen as one of their beneficiary charities last year.

It will help pay for us to have staff based at the two specialist centres for Rb in the UK – Birmingham Children’s Hospital and the Royal London Hospital – to support families from the moment their child is diagnosed, throughout treatment and beyond.

It will also help to fund our members’ days, to give families the chance to meet others affected by Rb.

The grant marked the culmination of an amazing year of working with Global’s Make Some Noise, which is the official charity of Global, the media and entertainment group. Many of you helped to get the message out there on radio and raise vital awareness of Rb.

Retinoblastoma Awareness Week

May is always a busy month for us as it marks World Retinoblastoma Awareness Week and this year we released results of a public survey which revealed that two out of three parents aren’t aware that a squint or lazy eye can be a symptom of Rb.

A squint is the second most common symptom of Rb, after a white glow in a child’s eye. Last year nearly 40 per cent of children diagnosed with Rb had a squint.

Harley Shevill’s family kindly shared their story in the media to help raise awareness – Harley was 10 months old when she was diagnosed with Rb in both her eyes. Just weeks later she had her right eye removed to save her life.

Harley’s mum Coral Baxter took her to get checked out after her mum saw something on the TV news about another little boy who had Rb with the same symptoms. This highlights the impact that our work to raise awareness of Rb in the media can have.

Harley’s story also featured on the TV news in Scotland and in print, including Take a Break Magazine and The Sun.

Vision Express Ambassadors

An amazing 33 of you were VIP ambassadors at Vision Express store events in 2018, helping to officially open new or updated stores.  

Many of these events were ribbon cutting ceremonies at stores following Vision Express’ acquisition of Tesco Opticians at the end of last year. They achieved widespread coverage in the local media, helping to make more people aware of Rb and its symptoms.

Dad CHECT Champs

To mark Father’s Day, we invited children to nominate their dads for a very special CHECT Champion Award.

Seven of you wrote to us and we were touched by your beautiful words and how thankful you are to your dads for everything they do to support you and your family.

It was a fitting way to mark Father’s Day this year and we hope to invite more of you to nominate your dads next year. Thank you to all of the children (and their mummies) who nominated.

CHECT teens go Global

In July, nine teenage CHECT members went on a VIP tour of the Global radio studios in London, home to stations like Capital, LBC and Heart.

They got a chance to see inside the studios and meet some of the presenters. All of the teenagers had a wonderful time and after the event one of them, Harry Harrison said: “The day was amazing. We all managed to meet new friends and reunite with old ones.”

Ride4Sight

A 30-strong team of volunteer cyclists rode into a rain-swept Nottingham in September after a gruelling 300km, two-day ride in aid of the Childhood Eye Cancer Trust.

Vision Express’ Ride4Sight celebrated the optician’s 30 years of trading by focusing on all things ‘30’, incorporating a 300km route climbing altitudes of up to 3,000m, raising £30,000.

It puts Vision Express’ fundraising total for CHECT at £600,000 since our relationship began in 2010.

Uninvisible Friend Campaign launched

To Mark World Sight Day in October, we launched a multichannel campaign – featuring characters Alice and her ‘Uninvisible Friend’ Dot – to raise awareness of Rb.

The campaign aimed to educate parents about the disease and its symptoms. Developed by leading global digital agency Wunderman and illustrated by artist Peter Clayton, it saw a large Dot blimp fly in East London’s iconic Old Spitalfields Market.

Passers-by were pointed to the campaign website, to read the dynamic story of Alice and Dot. Vision Express put a ‘Dot’ on the lenses of all the glasses in the children’s section of its Oxford Street store, and in-store digital displays told the story of Dot the Uninvisible Friend.

Alice Taylor, who was diagnosed with Rb when she was two years old, and her family visited the store to launch the campaign and share their story in the media to raise awareness.

The campaign – and Alice’s story – featured in press including the Daily Mail, Mirror, on Mumsnet and even made it on to the front page of the Fox News website in the USA.

Members’ days

We had three fabulous members’ days throughout the year – in Scotland, Colchester and York. The Colchester event was one of our largest with 80 people attending.

Not only were the events a great chance to meet other families affected by Rb and chat to CHECT staff, we also presented some very deserving children with CHECT Champion Awards, to recognise the courage and bravery they have shown during their Rb journeys. In 2018, we had 20 CHECT Champions.

Our next members’ day is scheduled for March 2019.

Christmas card competition

This year we invited our young members to enter our Christmas card competition to be in with a chance of seeing their festive drawings on our charity cards.

We were overwhelmed by all the fabulous entries that we received, so well done to the five winners and to everyone who entered this year. We hope you’ve enjoyed sending your cards to families and friends.

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Since 1997, the Childhood Eye Cancer Trust has funded more than 20 research projects, totalling almost £700k. Find out more about CHECT research…

Since the early 1990s, the Childhood Eye Cancer Trust (CHECT) has been funding research into the causes of retinoblastoma, finding new treatments and exploring the impact of living with the condition.

We believe that research is a vital part of the fight against Rb: helping us to understand the genetic changes that cause the cancer to develop; to investigate new, more targeted treatments with fewer side effects, and ultimately to reduce the negative impact on those affected.

Research also allows us to identify where help is needed so that CHECT can tailor the support we offer accordingly.

What has CHECT research achieved so far?

In 1997 CHECT funded a project that led to increased knowledge about the retinoblastoma gene and the mutations which can cause Rb, creating the possibility of genetic screening for families affected by retinoblastoma.

Now genetic screening is readily available and provides vital information to affected families and their medical teams. The impact of this cannot be underestimated.

I was diagnosed with bilateral retinoblastoma when I was fifteen months old. In addition to having one eye removed, I also underwent radiotherapy on the other eye. Whilst the treatment saved my life, it had a major impact on my vision, to the point at which I became completely blind in my twenties.

In 2011 I underwent genetic testing, which revealed that I carried the heritable form of Rb. Due to this knowledge, when my son was born in 2017 he underwent genetic testing at two weeks old. Rather than wait for the results, at five weeks old he was then diagnosed under anaesthetic examination and treated straight away with laser treatment. He is a very happy and healthy two year old, and has perfect vision. The difference genetic testing has made within a generation is incredible.

Darren Harris, CHECT Patron and dad to Devante

A more recent study developed these genetic findings further, using ‘Next Generation’ DNA sequencing technologies which can identify mutations at much lower levels in the blood than was previously possible.

This increases screening sensitivity, enabling even more children to be eliminated from costly and sometimes distressing screening processes.

Thanks to the support of CHECT, we can now identify mutations at much lower levels in the blood than was previously possible. We estimate that we can now identify mosaic mutations in approximately 10% of patients that would have previously tested negative, which means that we can provide accurate risk estimation to more family members than ever before. This, in turn, will enable us to exclude more siblings, previously deemed to be at risk, from costly and distressing surveillance.

Dr Simon Ramsden and Dr Trevor Cole

Alongside this, database and epidemiological studies have provided us with more accurate information about the risk for second cancers linked to the heritable form of Rb, making individuals and healthcare professionals more aware of the need for vigilance in this area.

CHECT has funded a range of research investigating the mechanics of the condition. Taking place at leading centres around the world, including Houston and Missouri in the USA and Melbourne in Australia, they aim to determine which genes play a role in the development of retinoblastoma; what makes the disease invasive (a precursor to being metastatic or spreading to new parts of the body); and whether we can target specific cells to slow down or even stop the development of tumours?

It is hoped the answers to these questions will help to open up new targeted options for treatment, with fewer side effects, and reduce the number of children currently requiring enucleation. 

We have also supported psychosocial studies which tell us more about the issues of most concern to parents of a child with retinoblastoma, and how they want to learn about these issues. This research has informed CHECT policy on support programmes, ensuring the issues that matter most to members remain central to our work.

What projects are currently underway?

CHECT continues to fund first class research with the potential to make a real difference to those affected by Rb.

Our most recently funded two projects are again using the latest technology to further our understanding of the mechanics of Rb, as well as investigating the possibility of developing more targeted treatment, with fewer short and longer term side effects.

CHECT retains its commitment to learning more about second primary cancers, through two current studies. The first of these is investigating the risks posed by the different genetic mutations associated with heritable Rb and by the treatment received.

Records will be analysed to calculate the statistical estimate of the risks of tumours occurring later in life. CHECT hopes this will lead to better information being available which could potentially lead to earlier diagnosis and treatment of these second cancers.

The second is a ground-breaking project to create a single national Rb registry, which will be an essential resource in understanding the effectiveness of treatment plans in the UK, together with the risks of disease progression and second cancers in later life. The first rare disease registry of its kind in the UK, this project will lead the way for the establishment of similar registries for other rare diseases across the NHS.

It also remains important to CHECT that we understand more about the impact of living with retinoblastoma. We are looking forward to the results of research exploring the difficulties experienced by children and parents of living with an artificial eye, as well as their coping strategies.

It is hoped this project will help to develop clear best practice guidelines regarding clinical management of these children, and to promote innovation in the development of clinical resources to support adaptation to living with an artificial eye.

Member involvement

The lived experience of individuals affected by retinoblastoma is at the heart of our research strategy. Our Scientific Advisory Committee includes a number of members with personal experience of Rb.

At our 30th Anniversary Members’ Weekend in 2017 we held a session to get input on areas of psychosocial research members felt were a priority for them, and in 2018 we surveyed members to get feedback on the current and future CHECT research strategy.

How do we fund CHECT research?

We do not receive any government funding, and the majority of our funding is through donations. Thank you to all our supporters for their tireless work raising funds for CHECT, and to organisations such as Fight for Sight and the Greendale Foundation, without which none of this research would be possible.

The Childhood Eye Cancer Trust is a member of the the Association of Medical Research Charities (AMRC), the national membership organisation of leading medical and health research charities.

Members are audited regularly to ensure their processes are of the highest quality so membership is a ‘kitemark’ of excellence. CHECT is also a non-commercial partner organisation of the National Institute for Health Research (NIHR) which is the “research arm” of the NHS. We fund UK and international groups carrying out world-class research into retinoblastoma.

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Nearly 10 years ago, in two different parts of the country, two children were diagnosed with retinoblastoma. Their families didn’t know each other but their stories bear many similarities – and now the pair have come together to receive a prestigious award in recognition of the courage they have shown during their brave journey…

James’ story

James, 10, from Northumberland, was diagnosed with retinoblastoma in 2009 when he was 20 months old. Tests revealed that James had cancer in his right eye and needed surgery to remove it in order to save his life.

His mum, Julie Ann Weatherly, said: “It all started when I noticed something white in his eye while he was in the bathroom. It must have been the way the light caught it. At first, I thought I was seeing things, but then his grandma took a photo of him. When she had it developed, there it was again, this white light in his right eye.

“We went to the doctors and were assured that it probably wasn’t anything to worry about, but then James started bumping into things because he couldn’t see anything on that side. We managed to get him into the Royal Victoria Infirmary in Newcastle and it was there we discovered that not only had his retina detached, but he also had a large tumour.

“That was on the Friday. The following Thursday we went down to the Birmingham Children’s Hospital ready for an appointment on the Friday. The Wednesday after that, James had his operation. It all happened so quickly.”

James now wears an artificial eye and undergoes regular check-ups, but he is an active, happy boy who loves playing for his local football club.

Julie added: “James has been magnificent. He loves his football and played in goal for a long time, even having lessons. To be honest he’ll play anywhere – in defence, in midfield, he really doesn’t seem to mind. His artificial eye can cause him discomfort, something which he uses steroid cream for, but other than that he’s just like any other boy his age. I’m so proud of him.”

Olivia’s story

Olivia, nine, from Armthorpe near Doncaster, was diagnosed with retinoblastoma the same year as James, when she was just three-and-a-half months old.

Tests revealed that Olivia had cancer in both of her eyes and needed to have one of them removed. She now wears an artificial right eye and also undergoes check-ups every six months. But Olivia has not let this stand in her way and is a very happy, active youngster who has worked her way through various swimming badges and become a blue belt at Taekwondo.

Her mum, Jane Harrison, said: “I first realised something wasn’t right when we were in the bathroom together one evening. I’d run the water and put Olivia in the bath. She was lying there, kicking her feet, and as I turned to get a towel I caught sight of a white light in one of her eyes. You could see it under the halogen bulbs in the bathroom but not under the normal lights in the rest of our house.

“I took her to an out-of-hours doctor that night who thought it might be a cataract or detached retina. The next day we saw our own doctor and that led to us being referred to the local eye clinic at Doncaster Royal Infirmary. It was then that we were told she had no vision in her right eye.

“The following week we went to the specialist children’s hospital in Birmingham where Olivia was diagnosed with retinoblastoma. Ten days later she was operated on and, the day after that, began chemotherapy on her left eye. It all happened so quickly.”

Jane adds: “Olivia is such a resilient girl. She embraces life with a real can-do attitude. I’m just so proud of her.”

CHECT Champions

Both children have now been named CHECT Champions by the Childhood Eye Cancer Trust. The CHECT Champion awards aim to recognise the courage, resilience and patience shown by all children affected by retinoblastoma throughout treatment and beyond.

Congratulations to all of the children who have won CHECT Champion awards this year, you are all superstars!

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Kate Foster was diagnosed with retinoblastoma as a baby and had her eye removed before her first birthday. Now, 28 years later, she looks back on her journey to achieve her dream of becoming a nurse, so she can support families just like hers…

I was 11 months old when I was diagnosed with retinoblastoma in my left eye, after many visits to the GP. The tumour was 0.8mm from my optic nerve and because it was so big I lost my eye and needed chemotherapy afterwards.

A few days after my surgery I returned home with no eye – my mam and dad were devastated but my older brother reassured them that I was still beautiful. I remind him regularly of this now!  

After growing up and having numerous false eyes over the years I now have one I would say was pretty perfect. I have never let the fact that I have one eye define me, however it has been an influence in making me the person I am today. 

Growing up with an artificial eye

When I was little my biggest worry was taking it out and showing my friends how cool it was, I stood up at nursery and told everyone why I had a different eye following questions from other kids in the class. I was never fazed. 

As I got older that did change, kids can be cruel, so can teenagers and unfortunately so can adults. As a teenager I felt that having one eye made me different to everyone else – How would I ever get a boyfriend? Would anyone like me? Or would they be too worried about what other people would say if they did go out with me? 

I left school at 16, and I began to build my life with the support of all of my family. 

All I wanted to be was a nurse – I just wanted to care for people and make a difference to their lives. I wanted to be the nurse who everyone loved to have around, the nurse who always did their best. I wanted to support patients’ families through those heartbreaking and hard times, just like my family had faced. 

Realising a dream

My life experiences gave me the determination and motivation to make my dream a reality. Thanks to the continuous support of my family, friends and partner who I wouldn’t change for the world, I succeeded in my dream and became a nurse nearly seven years ago. 

My mam and dad are my rock, they picked me up when life got tough, wrapped their arms around me and reassured me it would be okay, they taught me how to be a better person.

They forever told me how beautiful was, until I started to believe them. They supported me through the good, bad and ugly times and the love I have for them is unconditional.  

My brother is so brave. He stood up for me and supported me through my treatment and copious amounts of hospital visits, he never moaned about anything. 

Falling in love

I met my partner Lee eight years ago, I remember telling him about my eye not long after we met and I was so nervous. He was not fazed in the slightest, my eye didn’t have any influence in his decision for us to get together.

He continues to support me every day, in every decision I make. He is my best friend. He gave me the confidence to believe in myself, he continues to believe in my ability and pushes me to always reach and succeed in my dreams. 

I don’t know what I would do without my best friends, both Nicola and Stacey have continued to believe in me, support me and pick me up when the hard times come around. 

I am now 28 years old, I own a house, drive a car, have made plenty of mistakes but learnt from them, have the best family and friends, the most amazing partner and I’m a nurse studying for a second degree in public health. I can honestly say having one eye hasn’t stopped me doing anything.

People still ask about my eye sometimes, and when I get the occasional cruel comment it does still hurt, but doesn’t that say more about them? And whether it be the fact I had a false eye or a huge spot they would always find something.

Don’t let retinoblastoma define who you are, dream big, there is nothing in this world that can’t be achieved. Always remember that everyone is fighting a battle we might not know anything about.

We all have our insecurities, but having one eye definitely makes me who I am, and honestly I would not change a thing about my life, because I wouldn’t be me.

I wouldn’t have the family I do, the friends I do, or my partner. I look at them every day and feel very lucky and grateful, and I thank my lucky stars I have them in my life.

If you’ve been affected by retinoblastoma, or you’re worried about it, we are here to help. Please visit our support page here to find out more and get in touch. 

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Have you, or someone you love, been affected by retinoblastoma (Rb)? Would you like to share your story to raise awareness of this rare cancer and help others going through the same thing? If so, we would really love to hear from you.

Many people first hear about Rb and its symptoms after reading about it, may be in a newspaper or magazine, or on social media – like a Facebook post that someone has shared. Read how a story on the evening news led to Harley’s diagnosis.

These stories are a really important way of letting people know about Rb and how to spot the signs. And they can also be a huge comfort to the parents of newly diagnosed children, who can often feel very alone and isolated.

There are a few different places to tell your story:

CHECT website

Our website gets more than 9,000 visits a month and the “your stories” section is one of the most popular areas. We also share all our latest articles on our Facebook and Twitter pages.

InFocus newsletter

We print more than 2,500 copies of our InFocus newsletter twice a year for our members and supporters – in May and November. Each edition features real life stories, news, information and support articles.

If you’d like to tell your story in InFocus, or you have any tips or advice that you think other parents would find useful, please email us a brief outline.

Media

Sharing your story with the media is a really effective way to raise awareness of Rb among other parents.

We’ll write the press release, which you’ll read and approve before we send it out, and liaise with the media on your behalf.

How to send in your story

Email us your story, in your own words. There are no rules here, just start at the beginning and write about your experience. This could be one particular time in your life or your whole retinoblastoma journey. Please aim to write about 600-800 words but don’t worry if you go over or under this.

Please also send some photos to go with the story. Please try to send the original files rather than photos that have been reduced in size.

Email your story and photos to info@chect.org.uk. If you’d like to chat through anything, you can call us on 020 7377 5578. Thank you.

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Today is #YouMadeItHappen day, and a chance for the Childhood Eye Cancer Trust to tell you about the difference your amazing support has made.

We’ve been helping families for more than 30 years, but we don’t receive any government funding so we rely on donations to pay for our work. Quite simply, we couldn’t do it without you

So on this special day, we want to say a huge thank you to each and every one of you who has supported us – whether that’s raising awareness, holding an event, making a donation, volunteering or any of the other wonderful ways that you help us.

Because of you, here are some of the many things that we have achieved in the last three years:

• 100% of families offered support following a diagnosis of retinoblastoma
• 7,000 hours of support provided
• £13,400 provided in grants to help with costs
• 14 members’ days held across the UK for families to meet others
• 56 children given CHECT Champion Awards to recognise their bravery
• 5 events for teenagers to meet others and boost their self esteem
• 21% increase in the number of parents aware of Rb
• 36% increase in children being referred within 2 weeks of their first visit to a health professional
• £93k awarded to new research projects

You can read more about our impact – and our future plans – in our 2015-2018 impact report here. From all of us here, thank you for your support, we are so very grateful.

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Two children from Lincoln who have battled a rare eye cancer were guests of honour to officially open a new Vision Express store in the city.

Sophie Dowling aged 6 and Arwen Somers-Wilson, 4, are recovering from retinoblastoma (Rb). Sophie was diagnosed last year after her mum Hannah noticed a reflective glow in her eye. Thanks to a post on Facebook that Hannah spotted about the common symptom of Rb, Sophie was taken to her opticians and received the treatment she needed.

Arwen also had a white glow in her eye and was diagnosed with Rb after a tumour was detected in her left eye. Following surgery to remove her eye, Arwen is now cancer free.

Representing the Childhood Eye Cancer Trust, which is a partner of Vision Express, the youngsters cut the ribbon at the store after its relocation to a new unit within the Waterside Shopping Centre, alongside resident David Clough, who has been a customer for 22 years.

Sophie’s mum, Hannah Dowling, said: “Helping to raise awareness about retinoblastoma is really important to us as a family because we didn’t know anything about it beforehand. Simply knowing the signs could help a family find it in its early stages. Having regular eye tests is also really important, not only does it check your vision but also the health of your eye. Without an eye test Sophie wouldn’t have been referred to the hospital and we wouldn’t have found out about her cancer.”

If you’d like to become a CHECT ambassador and represent the charity at events like this, we’d love to hear from you. Email us at info@chect.org.uk or give us a ring on 020 7377 5578. 

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All her life, Angie Campbell had dreamed of being a mum and having a large family. But after being diagnosed with a genetic form of retinoblastoma as a baby she knew that her path to parenthood wouldn’t be straightforward. She takes us on her remarkable journey over the last 18 years to realise her dream…

As I grew up all I wanted to do was be a mum. I had no idea that the cancer I had as a baby would mean that this simple life plan would turn into an 18-year-long traumatic and emotional journey.

My firstborn boy Kieran inherited my mutated gene and had to endure 20 months of active treatment to save his eyes. This had a devastating impact on both Kieran and myself. I knew that I didn’t want him to be an only child, but also knew that going through that again was not something I was strong enough to do.

When Kieran was two years old, a conversation with Dr Elisabeth Rosser gave me hope that I could have another child and not pass on my gene. She referred us to University College Hospital (UCLH) and we began the process of pre-implantation genetic diagnosis (PGD).

It sounded so easy and an answer to my prayers. I had no idea that it would take four years of trauma before I would meet my second son.

We were the first people in the UK to go through the PGD process for cancer and therefore had to go through the battles for funding, the Human Fertilisation and Embryology Authority (HFEA) approval process, the huge media exposure and the wait for the team at UCLH to develop the techniques needed to carry out the treatment. It was excruciatingly difficult but we were very lucky that the treatment worked first time and I had a healthy baby boy, Cameron, who did not inherit my faulty gene.

My path to motherhood had been so challenging and heartbreaking in so many ways and over so many years. I felt extremely blessed to have my two boys who were both healthy and happy, but also sad that I would not get the large family I desperately wanted. I decided to become a foster carer – I may not be able to have any more children of my own but I could be mum to many vulnerable little ones that needed my love.

Little did I know that this decision would lead to me meeting my youngest son. Dane came to me at two days old and was loved unconditionally from that moment on. He officially became my son at the age of two when we were unable to find adoptive parents for him, but I believe he was always destined to be my boy.

So I was a mum to three beautiful boys and time was healing a lot of the old wounds. My eldest was 17 and I was a very different person to the 23-year-old that nursed her son through cancer. My husband and I decided to try for one last child.

We did this with the full understanding that the baby may inherit my gene but I had reached a place in life where I was OK with that. We had an amniocentesis test when I was 16 weeks pregnant and it was only a few days later that we received the most amazing call to let us know that our baby did not inherit my gene and that we were having a little girl. The relief and joy were truly overwhelming. Millie arrived and completed our family in March this year.

Looking back, it feels as though my whole adult life has been spent trying to achieve this family but I cannot think of a better use of my time or energy. I may not have taken the conventional route to get here but I have the four children I dreamed of and I love every second of the chaos and noise.

If you would like more information about having a family after retinoblastoma, please visit our resources page or speak to your support worker.

This article first appeared in the Autumn/Winter 2018 edition of our InFocus newsletter. You can download the full newsletter here.

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